Editorial Note: This is part 2 of the post by Heather and David Roberts – See RoAccutane and The Perfect Circle.
Ever since in 2012 our son Olly died after using it, we have tried to learn what it does to the body and the mind. For the most terrifying thing about it, apart from the teratogenic damage to unborn babies, is that it can seriously, and we feel irreversibly, affect one’s thinking, via initially the lowering of mood of the person who takes it.
Our discoveries
Acne is a menace for anyone, particularly when you are young, especially if it becomes cystic acne which means it graduates from a few intermittent spots to horrible lesions and eruptions like boils on the skin, which can leave scars. Back in the 1960s when presenting with the first signs of recurrent acne, a GP offered antibiotics and medicated washing lotions, and sunlight. Some doctors admitted 40 years ago that diet could affect it. Also hormones and stress played a part.
My own acne went on into my 30’s until I discovered, by chance, that when I ate butter, it got worse, and when I stopped eating dairy foods, it got better, and disappeared unless I ate a lot of chocolate. For me the damage had been done in my teens and I did have some residual scarring on my back but I have at least managed to keep my mind in reasonable working order. Sunshine was definitely helpful, but only Mediterranean sun was hot enough to really make a difference. I did use an Ultraviolet Ray lamp at one point too. I guess nowadays I could have laser work done if I wanted it to look really good, and could afford it.
Today however, young people are offered the supposed magic bullet of RoAccutane – isotretinoin.
Isotretinoin was originally developed for shrinking brain tumors and for pancreatic cancer. Roche discovered that whilst using it for these purposes, acne improved in those taking it. They have always admitted that they don’t know exactly how it works but it is a Vitamin A derivative and capable of changing DNA and shutting down hormones, stopping the skin from producing so much sebum, which can clog pores and produce spots.
When Dr Werner Bollag, the Swiss scientist who discovered it, realized that it was being used by Roche to treat acne, he disassociated himself from it and said he felt that using something so powerful to clear acne was ‘like using a ballistic missile to blast a garden shed.’ He feared it would become the new Thalidomide and he abandoned work on the drug in 1971.
Dr Yoder, one of a pair of scientists who went on to develop and launch the drug in 1982 also expressed concerns and feared that tragedy might arise from its misuse because the potential toxicity of the drug had been seriously underestimated. It can permanently alter brain tissue.
Dermatologists say they only have a limited amount of time to treat each patient, the young person is very unhappy about their acne which is sapping their confidence, and RoAccutane – isotretinoin works well. It is also cheap. In UK we have 200 consultant dermatologist posts unfilled, so there is a long wait on the NHS to see one. People taking RoAccutane – isotretinoin have to have blood tests from time to time to make sure their livers are able to tolerate it. They are supposed to be closely monitored. All this points to the fact that Roche accept that it is a very powerful drug. It is in fact listed on the FDA’s list of the 10 most dangerous currently prescribed drugs. So it needs to be used with great caution.
Set against this, young people want their skins to look good again and would not really want to believe that any dire side effects are likely to affect them. They are probably told that these drugs can cause low mood and suicidal thoughts, but they are also probably already feeling pretty wretched about their skin and believe that if they looked better, there is no way then that they’d ever become suicidal, just the opposite, in fact they feel they would be on cloud nine. The ‘hoped for’ good outcome is sadly not the case for many who take it.
Around 80% of teenagers will have acne at some point, and for 10-15% (around 250,000 in Britain) it is bad enough to warrant treatment with an isotretinoin product.
RoAccutane – isotretinoin is prescribed regularly now, and prescriptions have gone up massively over the last few years, having doubled from 13,500 in 2008 to 27,100 in 2012 in the UK alone, despite its having 150 known adverse side effects. The majority of prescriptions, over 80%, are given for mild to moderate acne, and therefore not within the terms of its license, which is only for use to treat severe cystic forms of the condition.
Another source suggests all prescriptions containing isotretinoin have risen from 1,687 in 2008 to 48,797 in 2012.
Banding together
We discovered, from watching the BBC3 documentary, ‘Dying for a Clear Skin’ that there were others just like Olly who had died following taking the acne drug RoAccutane – isotretinoin so we banded together with them. Others way back had been from very high profile families. The first to raise concerns was Richard Todd, (the actor who played Guy Gibson in the Dambusters), whose son had died back in 1988.
We learnt that the PIL had been changed several times over the years to add in ‘the risk of suicide’ whilst Roche still insisted that there was no proven causal link for all the reported suicides. We found that there had been serious concerns about this drug for 30 years but miraculously, Roche have always managed to keep it on the market, even despite many lawsuits against them in the USA for colon damage and other problems, where it was withdrawn, supposedly, for commercial reasons. The MHRA had been lobbied, Parliament had been approached back in 2004, but still this drug went on magically existing.
RoAccutane is an example of an unhealthy alliance between the pharmaceutical industry and the drug regulatory authorities (MHRA and FDA). There seems little appetite to develop new and safer treatments. These drugs are cheap and two courses will often lead to an improvement in some patients’ skin but at great risk for the health of others.
Dermatologists and the drug companies cannot now admit that they have been wrong, there is too much at stake. In many cases patients have not been properly informed of the risks, monitored sufficiently, nor offered alternative treatments. When referred to a Dermatologist by their GP, so often they are told they are going to a clinic for RoAccutane and nothing else is offered or discussed as an alternative.
Once we had learnt all this, we joined together with a group of other bereaved parents and managed to be heard with MP support, in a Westminster Hall debate, chaired by Norman Lamb. This led to a further meeting with Earl Howe and the MHRA representative, and many of our own MPs. Earl Howe commissioned yet another report to be undertaken by the MHRA, which took 9 months entitled MHRA Review of Isotretinoin and Psychiatric Adverse Reactions, November 2014. When it came out, sadly all we parents thought it was a complete whitewash, yet again, and were bitterly disappointed, even by the team of chosen experts to contribute to it, having seen their previously well known and voiced opinions on the drug.
Direct action
Whilst awaiting the results of the Report, we parents (and some users of RoAccutane who were still alive but suffering horrendously), staged a Protest with a huge banner, candle lit lanterns, posies of flowers, and pictures of our dead children, outside Roche’s premises in Welwyn Garden City in Hertfordshire. We had Press coverage and timed our demonstration to coincide with one in the USA on 24 April 2014.
We were eventually invited into Roche’s boardroom to speak with the Directors and we each told the story of our lost child, and one of the living users described emotionally what the drug had done to him, bravely explaining how it had permanently caused him sexual dysfunction. (Kevin Pezzi MD explains this in ‘The Science of Sex’, stating that in some people it can permanently affect libido and sexual pleasure).
We asked whether Roche would consider inventing and substituting a safe acne drug and so take RoAccutane off the market. We knew that reportedly they were making over £3 billion from it. They declined, saying this one was effective and anyway, they only make oncology drugs, which of course RoAccutane is, designed originally to shrink brain and pancreatic tumors.
We voiced our concerns that this medication could be bought online without prescription but Roche reassured us that they only sell directly to authorised pharmacies and that the MHRA monitors any such problems so if there were any, which they doubted, they would deal with them at once. We knew it was possible to order on line because some of us had tested it out. Roche seemed surprised to hear this, in total denial.
BBC investigation
A year passed and the BBC, after hearing Olly’s story on local BBC News coverage, decided to monitor the online ordering of the drug themselves. In their investigative series ‘Inside Out: West Midlands’ they proved how easy it was for anyone to get hold of RoAccutane without prescription or monitoring, despite the assurance that Roche had given us all so many months before. They also tested its effectiveness and side effects, getting people to describe their own experience of using it.
One woman had become pregnant whilst on it and had had to have an abortion as the damage to the foetus is so horrendous. The BBC also told the story of a young woman who had been taking it for 3 months and had so far not suffered any ill effects. The reporter himself had taken it years before and had been fine, but he told us that his brother also took it and had had to stop it within a few weeks as it made him so very ill.
Roche declined to be interviewed but issued their usual ‘this drug has no proven causal link with suicide’ disclaimer, and said they take the safety of medicines very seriously.
The representative from the MHRA, when challenged about their lack of effective and protective monitoring, said yes, there was more work to do, and implied that if there were problems, it was the fault of those ordering online, as ‘there will always be criminals out there trying to get your money.’
The BBC tracked down the director of the Turkish pharmacy who were supplying the drug back into UK for sale in an online pharmacy site, and he said he hadn’t realised it was a dangerous drug. Roche had supplied him legitimately but hadn’t apparently told him about the UK safety restrictions. Asked if he would now stop selling it on line, he said he would look into the European legalities. We wondered who the ‘criminals’ actually were perceived to be. It was obvious to all the viewers that the MHRA had totally missed the point of the programme.
Action we have taken
We have created a website and facebook page for ‘Olly’s Friendship Foundation’, linked to the ‘Acne Awareness Group’ facebook page, and we bereaved parents all try to write about our lost loved ones and raise awareness of the dangers of this drug, as well as offering information on other methods of treatment for acne.
We also describe Olly’s experiences of using SSRIs and anti-psychotic medication, which are routinely prescribed by GPs and psychiatrists to counter the low mood triggered by RoAccutane – isotretinoin. We have discovered that in some people, the combination can cause temporary psychosis and cause the sufferer to be permanently labeled as mentally ill, leading to more and more drugs being prescribed, creating ‘The Perfect Circle’.
We welcome reports from anyone who has experience of side effects of RoAccutane/isotretinoin so that we can piece together more evidence.
We continue to lobby Government, but fear that the financial might of Big Pharma is probably indomitable, as in 34 years of endless raising concerns by the public, nothing has really made a real difference to the magical survival of this dangerous drug; at least 5 people per year die after taking it, according to the statistics of the MHRA Report, which states it is 1 in 10,000.
Many of us feel that this is a very conservative figure, due to a great deal of under-reporting. Youngsters are continuing to die, often after terrible mental and physical suffering, like our son, and we seem powerless to change this. But we go on trying….however, what we really need is safe affordable effective acne treatments for all. How can one tell a desperate young person that there is a magic bullet treatment to take away their acne, but they can’t have it if anyone in their family has ever been mentally ill, and that if they themselves take it, it may make them ill. Many won’t even know their family’s mental history, and those that do might be tempted not to report it if they think it will prevent them from getting access to the so-called miracle drug RoAccutane, which they feel will heal their skin.
If RoAccutane were outlawed, new research could be done.
Laurie says
Heather, I really admire the spirit in which you and David work toward getting the word out about RoAccutane and the other drugs that affected Ollie. When I read your last post, I was overcome by how badly your family was treated, and for so long. There are patterns with these companies and their drugs and the history of RoAccutane looks somewhat like that of benzodiazepines: people had concerns early on and were ignored, harms kept occurring over many years and were/are denied, companies won’t change and no one can make them. I guess SSRIs and god knows how many others have a similar history.
Heather says
Thanks so much Laurie. I feel now that there must be a better way of treating acne satisfactorily, and for as long as RoAccutane-isotretinoin is there, more research will not be done. I am no scientist, but I do have a few ideas I’d like to air here, for others more expert in this field to comment on:
Point 1: could there be two very different kinds of reactions in individuals to acne, and therefore, should we be looking at at least two different ways of healing it?
—the young person going through puberty, with changing hormones, may well get a scattering of spots every so often, which could be treated with good skin hygiene, not too much washing to dry out oiliness, but keeping it clean and trying not to touch it with oily hands etc. also watching whether certain foods make the spots worse. Trying not to worry about it too much, being aware that this is likely to be a phase lots of us go through, and it will pass.
—-then there are those like Olly and me who seem to get really very severe acne, erupting into painful boils and lesions one after another, particularly on the back, neck and chest. To look at Olly’s face, you would never guess what his back and chest were like. This acne did not pass away with puberty. He tried literally everything he could get his hands on, to make it go. Until he resorted to RoAccutane- isotretinoin, and even that didn’t really make much difference to his skin, lastingly, but sadly, it sure did mess his mind up, and his joints, and his liver, and his gut, and his muscles, and his eyes, and his hair, and plenty more besides.
if we look at his early history, we see a baby born by Caesarean section, having been kept from miscarrying by his mum having regular shots of progesterone through the pregnancy and having to rest up for months, the last month in hospital. He could only digest breast milk, and stayed on that for a year. Cows’ milk and soya gave him terrible colic. Aged 5 he became asthmatic. He was a worrier, but at the same time, a loving, cheerful and kind child. Age 7 he was tested for coeliac disease and was shown to have a leaky gut. Age 9 he was caught in crop spray, and became sensitive to organo- phosphates on our sheep farm, having CFS for several years, but never missing school, being of a rather determined non-attention seeking disposition and not wanting to stand out from the crowd. He was still a worrier, but hid it well. Age 14 the acne began, with a vengeance. The only thing that drove it away was following the Stone Age diet. This was rubbished by his dermatologist, so he stopped it. He always loved to drink a glass of cold milk, straight from the fridge.
Could we surmise that Olly’s kind of acne was gut related? So, by shutting down the outlets on the skin for oily sebum, he could not get rid of it any other way. If his leaky gut in addition meant that food escaped also into the blood, and didn’t go out through the digestive process, shutting things down was probably not a good idea.So perhaps it was trying to get out via the skin, hence the boils and lesions. Add to this, if he did not have the CYP450 enzyme, he could not detoxify anything, including medicines easily.
Once onto the RoAccutane- isotretinoin, which works by closing down skin, hormones, affecting DNA, he would be in a gridlock where the only place for toxins to go would be to cross the blood brain barrier and cloud his rational thinking. Add to this the perpetual worry about having such ugly skin, with no prospect of improvement, and you are into a downward spiral. I would love to know what was in the powders or pills the homeopath used when Olly was about 17, (but the practitioner wouldn’t tell us) as maybe they introduced some kind of bacteria, or sulphur. It made such an amazing worsening, that we were extremely surprised. We asked for an antidote but apparently there wasn’t one! It was supposed to get worse and then better, but it just got worse and worse and worse!
I feel we need to get school biology departments involved, doing their own research. They must not be Pharma funded. They are best placed to test out what foods, lifestyles etc work, maybe taking weekly ‘selfies’ and comparing their individual results. It would be fantastic if those who wanted to could have the saliva test for CYP450. It would be even more fantastic if they could crack the code of acne in all its forms, and themselves earn the funding from the State (which we think at one point Earl Howe said was on offer) to change lives, and make Roche’s RoAccutane-isotretinoin a thing of the past. They could save so many like Olly in the process. Any ideas on how we could propose this without Big Pharma interference? Any biology teachers out there interested to set up a trial. Obviously not to include antibiotics or RoAccutane, but anything natural and safe that could help. The Universities can’t/won’t do it because so many of their research labs are Pharma funded. Over to you….
Carla says
Dear David and Heather,
I am very proud of you and other parents confronting these powerful organizations.
Many parents are grieving and they need to be very sensitive in how they approach these meetings.
I was very shocked when I read that:
Another source suggests all prescriptions containing isotretinoin have risen from 1,687 in 2008 to 48,797 in 2012. ~ This is very worrying!
I believe that a lot of meds can permanently damage brain tissue however, what are pharmaceutical companies doing??? Washing their hands of any accountability.
This is not ethical business.
These acne medicines should come with a warning, also.
I have spoken to many young people regarding this medication and many have had unfavourable outcomes. Some suffer from multiple allergies whilst others generally feel down.
The same lame excuses pharmaceutical companies have to offer is:
‘ This drug has no proven causal link with suicide’ disclaimer, and said they take the safety of medicines very seriously’.
If this is the case, MHRA/FDA and whoever else is involved, have failed their duty of care.
They are putting profits before people and I am certain that it will come back to bite them in the proverbial – (excuse the language!)
There are enough people grieving out there as a result of these meds ruining the good minds of their loved ones.
If the MHRA/ FDA want to speak with me, I have no shame in telling them how I cope on a day to day basis, from having ingested a med that they deem as safe.
To understand how these people feel, one has to walk in their shoes and REFRAIN from using the same old lame excuses, year after year.
People have been maimed and died as a result of ingesting these meds and they are demanding CHANGES so that no one else has to suffer the same fate.
I am humbled by what you and many other parents are doing to create an awareness regarding this dubious med.
I am sorry that beautiful Olly and others have had to suffer unnecessarily.
If RoAccutane – isotretinoin, is used to shrink brain and pancreatic tumours and the clinical results have been favourable, let it treat what it was originally intended for.
You are on a mission Heather and David. I am glad you have likeminded people support you with your mission. Having someone to lobby for you is an extraordinary gift.
You may not see the results of what you want to achieve now however, I have faith, trust and believe that all your prayers will be answered very soon.
Keep up the great work!
It takes a lot of guts and courage to stand up for a cause and it can be very challenging when you get knock back after knock back. Olly is guiding you in spirit.
Change can only come about when people band together and the ‘ripple effect’ keeps spreading wider into our communities.
If they don’t change, people will be well informed. Your voices will be heard because you are informing people before they get their hands on that script.
All my love and blessings to you all, Carla
mary says
Carla, I feel that your comment regarding the original intentional use of RoAccutane and its use, today, for acne is so very true. I also feel it’s true of SSRIs – surely intended for major depression but now handed out for the slightest hint of unhappiness. We all know why the companies do this, of course, it widens the market for their products and increases their profits no end. All of this without any further work on their part, no extra research to pay for – they’re laughing all the way to the bank……….and we are so gullible, we swallow every word that they utter. Haven’t NICE or the MHRA pointed out that SSRIs should only be used to treat major depression? – yet they seem to be shocked by the idea that these are still handed out for lesser ailments. Why can we not have a body, without anyone within it being in pharma’s grip, which could clamp down on these wrongdoings? Surely, in the long run, it would cost the country less to set up and run such a group than it does to compensate individuals for the injuries caused by the drugs? ( By compensate, I mean provide welfare benefits etc. – not compensation).
I would really like to think that things are on the move as regards an awakening and a willingness to ‘stand up and be counted’ – following in David, Heather and the rest of their group’s footsteps – by ALL who have been injured in this way. To this end, we need to encourage the ones who have been lucky enough to recover and their families to join the ‘walking wounded’ and their families to support and sustain the struggle already being so bravely fought by the families who have lost loved ones – we must move together and make our voices stronger.
Twelve months ago, had we been told that Brexit would have happened here in the UK or Donald Trump would become US president – we would have laughed it off as impossible. The reality is that the ‘ordinary man in the street’ has suddenly woken up and felt the pull of ‘group power’. Let’s make 2017 the year when the ‘group’ takes its ‘power’ to the people and awakens them to the grip of pharma – and ask for their support to help us to work towards a loosening of that grip, for the sake of future generations.
annie says
Great comment, Laurie….positive thinking and the name game..
https://iai.tv/video/positive-thinking-and-the-name-game
Carla says
Dear Mary,
I agree with you wholeheartedly.
People power is invariably, one way of creating CHANGE.
The average person does have the power.
Tapping into our unlimited resources and switching gears, is going to achieve ‘optimum’ results. It is al about changing our mindsets.
Just look at what Erin Brockovick achieved! ; )
Give me a podium, megaphone and a crowd of people and there will be ‘no one stopping’ me.
We have these great ideas that could revolutionise STAGNANT thinking.
Love Carla
http://www.bing.com/search?q=if+today+was+your+last+day&src=IE-SearchBox&FORM=IENTSR&pc=EUPP_
Heather says
Some very interesting comments here, thanks to all of you. I do feel we need to come in from left field and try to offer solutions to the problems these drugs we’ve all listed, so that we make them redundant and we progress forward. Heaven knows, thousands of us, along with enlightened medical people, have been confronting Big Pharma head on endlessly and year after year, but their massive financial might scares governments and makes them appear unassailable. But if we find solutions to the problems the weary medics prescribe these drugs for, they will fade away like the dinosaurs they are.
We need to move some different pieces on the chess board. Once we have shone light on new safer and more effective treatments, got them out into mainstream use, then we can turn back in force onto exacting some kind of retribution for all the Big Pharma criminal cover ups and torture of sufferers from their poisons, that has gone on. Our problem is, how to get the unbiased research going, using the best minds we have to make a real difference to the world.
The Candle Vigil on 2nd November 2016 was a very good start. We harnessed our collective power of thought. That power can move mountains. Skeptics may not agree, but it has been shown to work in many spheres, time and time again. It is all that we have, but in a sense, it is the best thing of all. Let’s light more candles at Christmas and keep the energy flowing. We are unstoppable now, we are on our way. For the sake of our children’s futures, we have to stop this evil torture, and revert to basic common humanity and honour. And we will.
Carla says
Dear Heather,
I agree with you whole heartedly.
Lighting a candle, is a symbol of hope for all.
Positive energy creates shifts in consciousness.
Honouring humanity, is what this life is all about.
I would like to take this opportunity to wish everyone a Merry Christmas and a Prosperous 2017 filled with lots of love, good health and happiness.
When we stand united, all things are possible.
Love Carla
Great acts are made up of small deeds ~ Lao Tzu
annie says
“They’re very safe”
“Better than well”
Dead bodies
“I can’t enjoy anything”
THE CANADA ‘FREE’ PRESS
A telephone interview with David Healy ‘these drugs are a dud’
http://canadafreepress.com/article/dead-bodies
http://canadafreepress.com/article/i-cant-enjoy-anything
annie says
The Real “Mental Illness” Epidemic: Withdrawal from Antidepressants
https://www.madinamerica.com/2016/12/real-mental-illness-epidemic-withdrawal-from-antidepressants/
Drug companies prey on…children..
[http://www.baltimoresun.com/news/opinion/oped/bs-ed-youth-overmedication-20161225-story.html]
Patrick D Hahn
No doubt this essay will elicit the obligatory incantations against “stigmatizing” the mentally ill. But there is a world of difference between stigmatizing the confused and vulnerable, and stigmatizing an industry that preys on the confused and vulnerable.
mary says
Another article of interest to you Annie, and many others is ‘Once Upon a Time in Withdrawal’ by Jarett Burke on Mad in America. I particularly like the final sentence or two – so very true!
annie says
Yes; I thought it very powerful and , me too; true…
“I had to be in bed with pillows over my head to block out all light and sound. I lay in bed wanting to die, daily.”
https://www.madinamerica.com/2016/12/once-upon-time-withdrawal/
Mary Newton December 31, 2016 at 12:33 am
Jarett wrote:
“Psychiatry can be a monstrous system where trusting people are chewed up and spit out.”
Jarett,
Kudos and brownie points to you for recognizing the worst and most neglected evil of the whole psychiatric system: the abuse of vulnerable people’s trust by powerful and well educated professionals. It compares unfavorably to priests’ sexual abuse of children. Children can grow up and escape their tormentors. Victims of psychiatry too often remain stunted and dependent until their too-early deaths, crippled by their faith in the god-like suits and heels who are paid so handsomely to stigmatize and drug them for life.
So keep up the good work toward the day when we have a Pope Francis of Psychiatry who recognizes what’s going on and acts accordingly. How about going back to school and applying for the job yourself?
Best regards,
Mary Newton
Pope Francis…..a Winning Smile, and two complimentary comments from the Mary’s..
annie says
Mugs……..mug heaven..
http://mpegmedia.abc.net.au/rn/podcast/2011/10/bbg_20111016.mp3
with Dee Mangin and Jon Jureidini
Quote:
“sleazy”…
Turning sorrow into sickness: An interview with Jon Jureidini
http://www.psychotherapy.com.au/fileadmin/site_files/pdfs/Jon_Jureidini_Interview.pdf
While not always attracting ‘approval’ from others in the debate, Jureidini has become a quiet voice of critical appraisal and common sense. In this interview, he talks about the impact of the increasing medicalisation of misery in our society.
Sounds familiar…?
BIG thing, small package…
http://1boringoldman.com/index.php/2017/01/02/big-thing-small-package/
annie says
NHS Oxford, speaking..
Patient Involvement Blog…………………………………….?
[http://oxfordbrc.nihr.ac.uk/blog/trials-and-tribulations/]
Carla says
Dear Annie,
How can people be fooled by this nonsense?
Marketing hype – destroy heathy people all in the name of science!
Some people are just so gullible :’ ( just like I was! (past tense)
Heather says
Erin Rowlands, a 15 year old from Bangor, North Wales, has had her life wrecked by RoAccutane-isotretinoin. A ‘rare’ side effect nearly killed her, she lost all her hair and is now diabetic. Like Olly, she had been targeted by bullies at her school because of her skin. Her dosage of the drug was increased from 30mg to 70mg a day in 5 months. Parts of her pancreas started to die after inflammation stopped the blood flow. She is now diabetic and reliant on enzyme pills after 4 operations to save her life. The stress of all of this caused her hair to fall out and she has been advised that she may never now have children.
She was in hospital for nearly 6 months and has lost 92% of her pancreas. Do followers of this Blog remember that RoAccutane was originally developed as a chemotherapy drug to treat brain tumours and pancreatic cancer? Interesting.
Two days after her dosage was upped to 70mg she was sent home from school with severe abdominal pain. She spent 3 weeks in hospital with suspected pancreatitis (inflammation of the organ), which then developed into necrotising
pancreatitis. She was sent to the Royal Liverpool University Hospital where she became the youngest person to have surgery for this condition.
Ironically the RoAccutane did nothing to stop her acne. She is reported in the Daily Mail online (23Nov2015) as saying ‘it makes me so angry to think that all I’m going through is for nothing. I will never be cured. This is going to affect me for the rest of my life’. She is now diabetic because she can no longer produce insulin and needs a daily course of tablets, injections and anti-sickness drugs. She has been warned that she may never have children.
She actually found a cream, costing £11, advertised in a magazine, that has now worked wonders on her acne.
Elin’s family have apparently approached Swiss drugs firm ROCHE which makes RoAccutane, to list pancreatitis as a potential side effect. The Company says it recommends that the drug is prescribed carefully following advice in patient leaflets…. A spokesman said regulators agreed that its ‘clinical benefits outweigh the risks’.
Notes written by hospital consultants linked RoAccutane to Erin’s health problems and asked for the medication to be stopped immediately. The Betsi Cadwaladr University Health Board which runs health services across North and Central Wales offered to meet with Miss Rowland’s family and discuss the case. That would have been in 2016 if it happened. It would be interesting to learn what came of it.
So many people do not realise that pancreas and colon damage can occur due to this drug. They do not make the link, and so their symptoms are not reported as connected to the drug. There have been millions of dollars paid out in the USA for colon damage. After Olly died, in discussion with my cousin we learnt that her son had suffered stomach problems whilst on it, and another son, tipped for excellent A level results, underperformed because of its effects. They didn’t make the connection until they found out what had happened to Olly.
Just trawling Google, there are endless cases of dire effects posted by desperate people about their ruined lives having taken this drug. Annie would have a field day if she researched them and put links on here. So many lives ruined. And still the horror and the risk goes on. And it would seem that unless we find an alernative and safe acne treatment, dermatologists will just smile wryly and say, ‘well, what else can we do?’ Quite a bit, actually, if they really spent some time and thought on it and came at it from a different mindset.
mary says
Erin’s story is certainly a very sad one which clearly shows the folly of using these strong medications for all the wrong reasons. There will always be the ‘doubters’ who will say that we can’t prove that the medication caused the real havoc which has devastated her life. That’s as may be but there are far too many similar stories of adverse reactions for the ‘coincidence’ tale to hold water any longer surely. There seem to be two ‘stings in the tail’ here in my view – one being the TRUE USE of this medication and the part of her body which was attacked by it; the other being the fact that a simple, fairly cheap cream worked so much better for her. Poor girl – if only hindsight could be accessed and reversed with a magic wand!
Another young lady, from the same area of north wales, has recently started a mental health blog. This has no connection to Ro-Accutane but to antidepressants and antipsychotics. She suffers quite severely from the ‘lows’ of depression – but is doing remarkably well in dealing with it. She has a very different way of approaching her ‘low’ spells and is sharing many of her experiences in a friendly easy-reading manner.
I know her from Twitter – as a Welsh speaker, but here she is using English in the hope of sharing her thoughts with a wider audience. Since many of us here feel, quite desperately, that we have to get our concerns out into the wider community and to a younger generation – I see her as a person who will do exactly that. She has over 2,000 followers on Twitter and shares her ‘mental ill-health journey’ there too – mainly in Welsh. I am sharing these details here, with her permission, in the hope that her stories will help us to move forwards and that our interest will help her to gain confidence and self-esteem in her ability to help others through her writing.
Her name is Malan Wilkinson, found on Twitter @malanwilkinson and her blog is called ‘My Blue Blog’. Easiest way to access the blog seems to be from her Twitter account at the moment. It’s shown there in English so no Welsh lessons needed! I hope you find her writing as inspirational as I do.
Heather says
Mary, Malan’s work is interesting and as you say, likely to become a very useful resource, particularly for young people like herself. She has many listed creative arts talents, and writes in a poetic and refreshing way. Thank you for alerting us to her blog, which is accessed via Google
mary says
Thank you for looking up Malan’s blog Heather. My comment was sent on one of the first days of her blog appearing which was before it could be accessed through a search engine. As you rightly say, it is now easily accessible via Google.
I agree with you that she is multi-talented – the sad fact is that Malan herself has difficulty accepting that. It is for those two reasons that I mentioned her here – that she, undoubtedly, will do her best to promote mental wellbeing in any way possible and that, maybe, her confidence and self-esteem will be strengthened by the knowledge that others find her blog rewarding.
annie says
It honestly doesn’t take a Field Day to find this stuff and I really hope that from the mounds of stuff on the IT, these few hit the spot.
Accutane (isotretinoin)
Everything you need to know about Accutane
https://www.acne.org/accutane.html
My happy son killed himself after taking the ‘wonder cure’ for acne: Warning from father of talented musician who was prescribed Roaccutane before committing suicide
Musician Jesse Jones, 24, said he ‘hated’ the acne drug in last email sent to parents
His body was found at the bottom of a cliff in Swanage, Dorset
Parents Derek and Patsy, who feature in new documentary, say they will ‘everything they can to get the drug banned’
Say prescribing is ‘like Russian roulette’
Roaccutane manufacturer Roche deny ‘causal link’ between drug and depression or suicide
Company say nine suicides reported in one year of 500,000 people known to be taking Roaccutane
http://www.dailymail.co.uk/news/article-2234470/Roaccutane-effects-Warning-father-Jesse-Jones-talented-musician-commited-suicide.html
Hollywood’s High Profile Accutane Lawsuit
[http://www.accutanelaw.org/]
Lawyers and Settlements.com
https://www.lawyersandsettlements.com/lawsuit/accutane.html
Heather says
It’s interesting that Annie you highlight, amongst all the hundreds and thousands of others, the example of the terrible loss of talented musician and student Jesse Jones, who died following what RoAccutane-isotretinoin did to him. Jesse’s brave parents made the wonderful film, ‘Dying for a Clear Skin’ shown first on BBC 3 in December 2012, too late sadly to save Olly, who would have been helped we feel sure to at last truly understand what effect the acne drug had really had on him, (contrary to the BS that doctors had blinded him with for years, by distracting him with talk of body dysmorphia because of his (by 2011) finally non existant acne, following Dr Tony Chu’s excellent Blue Light and laser treatment.
Even though it was screened too late to save Olly, it was such a relief to discover that what we had suspected, right from the start of his ‘mental’ problems in 2001. We were just so fortunate that Jesse’s father was a Producer and made that film. (Rather like, interestingly Katinka Blackford Newman, also working in that media industry, was able to write ‘The Pill that Steals Lives’ and draw our attention to AKATHISIA, which has proved a magnificent key to our understanding of why people die by prescripticide).
Jesse’s parents were able to collaborate on that film with the Medland family, whose very much loved son Jon was just completing his Finals in Medicine and had just a small amount of acne. He was prescribed the drug and within about 3 weeks he was dead. He had begun to experience the oft reported ‘low mood’ which must have suddenly become almost psychotic in intensity, just for a few moments. That, of course, is all it takes, just a few moments when the brain isn’t working right, and death comes so fast, for no reason at all. Like Jesse, Olly and all the others in our little group of 8, Jon had everything to live for. Their deaths made no sense at all.
When you add an SSRI to combat the ‘low mood’, the results are equally dire, if not worse, because then AKATHISIA kicks in, more drugs are given, and the poor acne sufferer becomes branded for life as being mentally ill. Of course they are not, they are suffering organic brain disease, but no one seems to want to acknowledge this. Except Dr Doug Bremner, whose scans show it, but whom the MHRA discounts as not being worth including in their Government commissioned Report in November 2014. Bremner showed that in many cases, over 20% of the frontal lobes were not functioning. They are an area of the brain we use for our reasoning skills.
I have just watched Leonnie Fennell’s brave, comprehensive but heartbreaking YouTube talk, about what an SSRI did to her dear son Shane, who was also dead within 3 weeks of taking it, and who had been driven to behave in a way totally out of character of this kind, funny, delightful brother. One would think that what happened to him, and to Jon Medland, although they were affected by two different medications, bearing in mind the short time between commencing taking them, and dying, one would think surely this is so obviously AKATHISIA that no one could fail to see it and ring alarm bells?
But no. Beware of the Distracting Hand, says Leonnie. With RoAccutane, beware of being told that their acne drove them to their deaths. Beware of the subterfuge. Maybe if Donald Trump really does take on Big Pharma, there is a silver lining in view.
Carla says
There must be some way of making Pharmaceutical companies accountable for so much harm their products induce.
I believe that any patient who was prescribed a medicine which induced dangerous side effects that the pharmaceutical company was aware of and failed to disclosed, should be sued.
I also believe that patients who believe they ingested some defective medicine and were deceived by false advertising and dodgy manipulative business practices should also be sued.
This is the only way we can make the dishonest pay for all the harm they have done!
Heather says
More on the theme of ‘what causes acne?’ And how it can be effectively treated without resorting to RoAccutane- isotretinoin.
I was Googling all the references to RoAccutane I could find, trying to group together all the many posted side effects that people who had them, were suffering. Having found a lady who has a YouTube video about her permanent dry eyes and the problems they have brought (a horrendous story by the way), I stumbled on a YouTube video by ‘Organic Olivia’ who at length describes the three key elements to the causes she has discovered, and offers ways to eliminate acne
.
A lot of her ideas are based on common sense, clearing the gut, using the amino acid L-lysine, and she explains the role of hormones, facial cleansing and stress reduction. It’s quite long, very comprehensive, but well worth investing the time to listen. I thought it impressive and very helpful. So for anyone ( or even any open-minded brave dermatologist) not wanting to resort to using RoAccutane-isotretinoin, who has severe cystic acne (or indeed, any kind of acne), it gives the results of her fascinating research. I only wish our son had had information like this when he was 21. She also blogs on her website [www.organicolivia] about her long struggles with poor health until she discovered how the gut works and how it is key to good health when properly understood and treated with care and respect. I’d suggest that her video on YouTube could be a wonderful resource.
annie says
Mental health reforms to focus on young people, says PM
1 hour ago
UK Politics
http://www.bbc.co.uk/news/uk-politics-38548567
We have Martha in the US, spelling it out..
Pleasing Wall Street but Not Patients and Taxpayers: Pharma’s Plan for 2017?
By Martha Rosenberg |
January 7, 2017 AT 3:04 PM
[http://www.theepochtimes.com/n3/2207523-pleasing-wall-street-but-not-patients-and-taxpayers-pharmas-plan-for-2017/]
and then we have Charlotte in Bournemouth, doing some of the same..
Should we be turning to antidepressants?
[http://buzz.bournemouth.ac.uk/2017/01/should-we-be-turning-to-antidepressants/]
and then we have…
Professor Sir Simon Wessely, president of the Royal College of Psychiatrists, welcomed Mrs May’s “new and bold vision”, but added: “We have a long way to go before mental health services are on an equal footing with those for physical disorders.”
You don’t think this is because it isn’t, as most doctors seem to make it all up as they go along and seem to develop a tendency to think off the hoof..
There were no shortage of ‘experts’ when all six drugs were aimed at me through a pea-shooter…
annie says
In search of Incredible..
“Whatever has happened has happened”
A rare glimpse in to the minds…of a ‘collection’ of psychiatrists..
King’s Research Portal
12 Sep 2013
DSM-5: a collection of psychiatrist views on the changes, controversies, and future directions
Charles B Nemeroff1,
Daniel Weinberger2, Michael Rutter3, Harriet L MacMillan4, Richard A Bryant5,
Simon Wessely6,
Dan J Stein7, Carmine M Pariante8, Florian Seemüller9, Michael Berk10,11, Gin S Malhi12,13, Martin Preisig14, Martin Brüne15 and Paul Lysaker16,17
https://kclpure.kcl.ac.uk/portal/files/12223031/Forum_on_DSM_5_BMC_Medicine.pdf
and ‘declared’ competing interests…
Competing interests
CBN has received grants or research support from the National Institutes of Health (NIH) and Agency for Healthcare Research and Quality (AHRQ); has provided consultation for Xhale, Takeda, SK Pharma, Shire, Roche, Lilly, Allergan, and Mitsubishi Tanabe Pharma Development America; is a stockholder of CeNeRx BioPharma, PharmaNeuroBoost, Revaax Pharma, and Xhale; and has received income or equity from AstraZeneca Pharmaceuticals, PharmaNeuroBoost, CeNeRx BioPharma, NovaDel Pharma, Reevax Pharma, American Psychiatric Publishing, and Xhale. Other financial interests include CeNeRx BioPharma and PharmaNeuroBoost. CBN also holds patents for methods and devices for transdermal delivery of lithium (US 6,375,990B1) and methods of assessing antidepressant drug therapy via transport inhibition of monoamine neurotransmitters by ex vivo assay (US 7,148,027B2). He is also on the scientific advisory boards of American Foundation for Suicide Prevention (AFSP), CeNeRx BioPharma (2012), National Alliance for Research on Schizophrenia and Depression (NARSAD), Xhale, PharmaNeuroBoost (2012), Anxiety Disorders Association of America (ADAA), Skyland Trail, and AstraZeneca Pharmaceuticals (2009); and is on the board of directors of AFSP, Mt. Cook Pharma (2010), NovaDel (2011), Skyland Trail, Gratitude America, and ADAA.
http://www.forbes.com/sites/paulthacker/2011/09/13/how-an-ethically-challenged-researcher-found-a-home-at-the-university-of-miami/#ba96879517b2
http://www.nytimes.com/2008/10/04/health/policy/04drug.html
http://www.pogo.org/our-work/letters/2010/ph-iis-20101129.html
Mr Witty said: “It’s appropriate that we have a limit on what we pay. In the past, whatever has happened has happened, but in the future there will be strict adherence to these caps, which will be clearer to everybody.”
Pre Paywall –
https://www.ft.com/content/7f6917aa-a067-11dd-80a0-000077b07658
Financial Times
October 23, 2008 3:00 am
GSK to publish level of advisory fees for doctors
By Andrew Jack
GlaxoSmithKline is to make public the level of advisory fees it offers to doctors and medical academics, and will strictly cap the payments they can receive in the US to $150,000 (£88,000) a year each.
Andrew Witty, chief executive of the UK-based pharmaceutical company, said he was introducing tougher new rules to impose a cap “without exception” on such payments and promised to publish the amounts.
His commitment comes at a time of growing concern that the widespread practice of payments by pharmaceutical companies may help unfairly influence “key opinion leaders” in the medical community, in a way that biases their judgments and recommendations for particular treatments.
GSK has recently been drawn into the debate in the US, after reports that Charles Nemeroff, chairman of the psychiatry department at Emory university in Atlanta, had received nearly $1m in fees from the company during 2000-06, most of which it is claimed he had not disclosed. He has recently stepped down from his post pending the outcome of an internal inquiry.
In Europe, the Dutch Health Inspectorate is investigating concerns about payments from GSK to academics who sit on the Health Council, an advisory body that recommended the use of Cervarix, the company’s recently launched drug to protect against cervical cancer. GSK said it had received “no allegations of misconduct”.
The cases have added support to a proposal from Senator Charles Grassley in the US to introduce “sunshine” legislation designed to require publication of fees paid to doctors, although the fate of his bill remains unclear.
“It’s appropriate that we have a limit on what we pay,” said Mr Witty. “In the past, whatever has happened has happened, but in the future there will be strict adherence to these caps, which will be clearer to everybody.” The company added that the “timing and infrastructure” of publishing details of its payments had yet to be determined.
The US National Institutes of Health, a large funder of academic research, as well as leading academic medical journals, have requirements for disclosure of conflicts of interests through both advisory fees to academics and broader support to their universities and institutions.
However, such disclosures are difficult to police and public registers of payments would make it far easier to identify any discrepancies.
The pharmaceutical industry has taken steps in recent years to limit accusations of influencing doctors, curbing lavish entertainment and luxury travel under the pretext of supporting their attendance at academic conferences. But critics continue to question payments to individual doctors as speakers and advisers to companies, as well as the drug industry’s heavy sponsorship of continuing professional medical education.
Bully pulpit
http://1boringoldman.com/index.php/2017/01/11/more-bully-pulpit/
annie says
More Questions than Answers…
For:
https://www.baumhedlundlaw.com/prescription-drugs/paxil-injuries/
https://www.baumhedlundlaw.com/pharma-news/paxil-news/
Against:
http://www.seroxatusergroup.org.uk/MHRA_investigation_GSKSeroxat%5B1%5D.pdf
Comment left on the FT..
uiuiuiui
Jan 3, 2016
Here’s an obvious point for readers and GSK investors alike. Glaxo’s share price has been in a secular decline since the SmithKlineBeecham merger in 2001. To assume that a CEO who has been in charge for 9 of those 14 years can wordsmith/market/spin/cherry pick facts (to analysts) and reverse ~$70 billion dollars of shareholder value destruction is at best a fallacy and at worst a fraud. It implies that the leadership ‘cult of the CEO’ is more important than the working culture of the underlying company. In reality what we are witnessing with GSK is simply a crisis of competence, not of confidence. The right people need to be in the right job to have a chance to change a decades long secular decline. Good luck with your powerpoint slides!
Data Based Medicine..
https://davidhealy.org/study-329/
Adam Jacobs @statsguyuk
Oh good grief. As if the “50% unreported” statistic weren’t mendacious enough… #zombiestatistics #AllTrials
9h
Heather says
In the case of RoAccutane-isotretinoin, it was taken off the market in the US reportedly for ‘commercial reasons ‘ but many of us think it was because Roche had had to pay out billions in compensation for people whose colons had had to be removed, due to the damage, irrefutable, from the drug. Roche usually seems to settle out of court finally, having dragged out the legal trials for as long as possible, to wear down their opponents. In UK it would be interesting to know how many colostomies have been necessary because of this drug.
David Chow, who died a year or so ago, had bravely struggled with chelitis of his lips, and subsequent damage to his jaw, all caused by the drug. He suffered terrible pain, yet despite this, he and his anaesthetist father did all they could to raise awareness of the horrors of RoAccutane-isotretinoin. David’s lips were so irreparably damaged that he could only eat and drink for many years via a straw. The bravery of this man is incredible. Despite the drug having taken away his chance of a relaxed social life, he produced an amazing collection of wonderful photography and lived for 17 years until the pain, like Olly’s, became too much.
The Internet is FULL (like Annie said earlier) of accounts of ruined lives, caused by this drug. Then, to be fair, we read of others for whom it has taken away their disfiguring acne. But many say it has returned as soon as they stop taking it. There is even an account written about the neurological and physical damage suffered by a girl whose mother apparently took it all through her pregnancy. This girl states that her life is almost unbearable. Normally these days no pregnancy would be allowed to proceed if the mother was on the drug. But with it’s availability on the Internet, one wonders how many youngsters have taken it without the required safety monitoring by their doctors? We know from the BBC Investigation about its availability online, that the Turkish importer, buying it legitimately from Roche, said he’d been selling it online for 10 years (!) and apparently Roche hadn’t told him how important the safety measures were, it being such a dangerous drug. A young person is most unlikely to admit to their GP that they have bought it secretly. They will just swallow it down, with no liver checks or blood tests to monitor their own health safety. And if they get pregnant, then what do they do? Are we therefore going to see a lot more damaged babies in years to come? Remember, one of its original inventors said he feared it would become the new Thalidomide.
Carla says
Where are the human rights lawyers to support all of us?
We need to be protected by people who discriminate, defame, shame and compromise us.
The drugs have ruined our good health and innocent people have unjustly died.
We need support ~ not eternal condemnation!
Humanity needs to be protected.
We need to learn from past mistakes.
Anything that is unprofessional or inhumane, should be investigated and the public need to be made aware of any unethical business ~ no questions asked!
Carla Bataljin
Heather says
One other thing which MUST be said. Cystic acne, (or indeed any disfiguring acne) is surely one of the worst things that can be inflicted on a young person. I well remember the utter hell it was for me. All through my teen years, I wanted to hide away and not be noticed at school. Every time I walked into my classroom in the mornings, knowing I couldn’t hide the latest crop, I was overcome with a ridiculous kind of shame. One girl used to say to me ‘you are so ugly, why don’t you just die?’ But I wasn’t suicidal, I wanted a solution.
I lived in London then. Aged 15 I used to catch the Underground to Knightsbridge, quite a long way into town from my home, and secretly used the sun tanning cubicles at a place where you put money in a door slot and set a time on the machine, put on goggles, and toasted yourself. I did this for quite some time, till my horrified mother somehow found out. I guess, looking a bit like a lobster must have given me away. ‘Don’t you realise, you could get skin cancer when you are older? she pleaded. But I couldn’t have given a hoot about when I was older and what the ultraviolet light could have caused. My life was frustratingly compromised NOW because of the wretched acne. Antibiotics like Tetracyline just gave me thrush and did no good anyway. We compromised and bought a little sunlamps to use carefully at home. It helped a bit.
What I’m trying to say is that, aged 15, if there had been the chance of getting my hands on RoAccutane-isotretinoin, even if secretly on the Internet, (had it existed then) I would have begged borrowed or even stolen the money to send for it. I wouldn’t have cared AT ALL about possible side effects. No one who has not suffered the plague of bad acne can possibly imagine how awful it makes you feel. This is why Roche are in one sense right when they say people can feel suicidal about their skin. But it’s exactly why we MUST find a safe and effective treatment for cystic acne, and make their dangerous drug obsolete urgently, because it is just too cruel to mess up the minds (and bodies) of those who are already suffering hell, by expecting them to play Russian roulette by taking this drug. And then if the poor soul gets ‘low mood’, and is given an SSRI, becomes AKATHISIC (unrecognised of course), then chances are, all their life’s dreams, college, happy social life, carefree creativity, may be gone. We must unite to change this. But, like I wrote earlier, with Big Pharma Roche in total control, and dermatologists desperate, how on earth do we do it?
annie says
The C.hronicles of N.arnia..
Charles Nemeroff MD
“Depression and other psychiatric disorders are brain diseases..
https://www.youtube.com/watch?v=iNERCNkFxbQ
Conflicting Interests in Toronto
anatomy of a controversy at the interface of academia and industry
David Healy
http://www.healyprozac.com/AcademicFreedom/Conflicting-Interests-in-Toronto.pdf
Pharma politics..
http://www.pharmapolitics.com/cbcnational.html
http://ahrp.org/bitter-pill-for-david-healy-academia-under-pharma-influence/
Ghostbusting in Paxil Birth Defect Litigation
http://www.healthsentinel.com/joomla/index.php?option=com_content&view=article&id=2735:ghostbusting-in-paxil-birth-defect-litigation&catid=5:original&Itemid=24
The next person the jury heard about was Charles Nemeroff. He was also an author on the atypical study. Nemeroff was the Chief of Psychiatry at Emory, until he lost the position last year, Healy told the jury. “He’s possibly best known or was the best known psychiatrist in the United States.”
“He influenced an awful lot of heads of departments, professors of psychiatry, general people within the field of academic mental health, and through them and an awful lot of prescribing doctors here in the U.S. And, indeed, perhaps worldwide,” Healy testified.
A link to “Articles” on the Emory website in mid-2009, brought up roughly 90 studies and papers that include the co-author Nemeroff.
Healy said he believed Nemeroff was one of the founding members of the Paxil advisory board and he participated in continuing medical education seminars with talks on Paxil.
Nemeroff would have been “the key person in producing the kinds of talks with slides that would have been held for large audiences of doctors, and then those slides and talks would have been distributed out to different doctors in the field who hadn’t been at the major meetings as he gave his talk,” Healy told the jury.
Caroline says
In 2007 Nemeroff was the second author on a paper about dopamine and depression. One line stands out.
“There is now an emerging consensus that the majority of depressed patients treated with selective serotonin reuptake inhibitors (SSRIs) and selective serotonin/norepinephrine re- uptake inhibitors (SNRIs) do not attain remission.”
Now you tell us.
And at the end:
“It is now clear that treatment with [SSRIs and SNRIs], although clearly superior to placebo treatment, frequently fail to render patients symptom free; ie, the majority do not achieve remission.”
In both cases, he’s saying the majority still suffer from depression while taking antidepressants.
He did a lot of damage before coming to that conclusion. (For both claims, the APA’s guidelines for treating patients with depression, ca. 2000, is cited as the source.)
annie says
Linked in..
https://www.linkedin.com/in/charles-nemeroff-3444495
annie says
Nice tie….
https://www.madinamerica.com/2017/01/mia-year-2017/
https://www.madinamerica.com/psychiatry-past-present/
TRM123 January 13, 2017 at 12:15 pm
Thank you Bob, and thanks to all your colleagues at MIA who have had such a successful 2016.
Knowledge, Understanding, and Hope are found here.
These are the critical success factors for the continued survival of those who themselves, or whose loved ones, have suffered so terribly from the arrogance, dogma and inflexibility of the casual and careless prescribers, who impose psychotropic drugging by deception, coercion and enforcement.
Sir William Osler observed: –
“The greater the ignorance, the greater the dogmatism”.
These words appear bespoke for those detractors who fear and contest your great humane and compassionate endeavour.
Retired Consultant Physician. U.K.
Heather says
In Annie’s comment on Jan 11th she lists, amongst many others, Charlie Nemeroff. I have previously mentioned that the main brave voice speaking out with his results of research into the harms of Accutane, was Dr Doug Bremner in the USA. He worked at Emory Uni alongside Charlie Nemeroff, well, in a position under him I assume. Dr Bremner, a psychiatrist, had been employed to promote Accutane, but some parents approached him after the bizarre behaviour of their son whilst on it and he began to collate similar cases (including suicides) and, like the good doctor he was and is, suggested that all was not well with this drug. A parent paid for him to do some further research and his results were mind blowing. But Charlie Nemeroff, along with others, did everything they could to undermine his efforts, threatening to ruin his career. It was only because the scandal broke, about Nemeroff’s undisclosed payments from drug companies, that Dr Bremner was saved. He has written a wonderful book called ‘The Goose that Laid the Golden Egg – Accutane, the truth that had to be told’ telling the story of his research and how he was targeted and worn down by the attempts of Big Pharma (Roche) working with Nemeroff, to totally discredit him. The book is interesting as not only does it explain the scientific research, but also describes the author’s own psychological personal experiences along the way, in an almost spiritual sense. On first reading it I wondered if he’d put this element in as a kind of smokescreen to water down his crusade about Accutane and deflect the ire of his critics. He has written other excellent books, such as ‘Before you Take that Pill’ dealing with side effects from all kinds of medications.
When our group of parents met Earl Howe at Portcullis House in February 2014, the MHRA representative was present, along with Sir Nick Harvey (now ex) Lib MP for Barnstaple, Ed Vaisey (Con) MP, Gordon Henderson (Con) MP, and Norman Lamb (Lib) MP, at that time in Cameron’s Cabinet. When Earl Howe asked the MHRA to investigate this drug YET AGAIN, we all asked for Dr Bremner’s research to be included, especially his scans which show that 21% of the frontal lobes in the brains of those taking Accutane/RoAccutane/ isotretinoin can be destroyed by it. The woman from the MHRA brushed this request aside, just saying ‘we do not rate his research’ or words to that effect. So it was not included in the Report, but the opinions of various pro-RoAccutane dermatologists and others, were. It is thus easy to see why, however hard the damaged users try to warn others, and get better treatment for acne, they are crying in the wilderness.
Maybe only by highlighting the unhealthy alliance between the MHRA and Roche, just like the unhealthy alliance of Nemeroff and Big Pharma, will we begin to wake the world up. And let’s not forget the role Nemeroff played in Dr David Healy’s loss of his appointment to a prodigious position in Canada. Thank heavens for the Internet, so that at least we can find out all sides of a story, and not have to rely on being spoon fed by a biased Murdoch owned Media.
Carla says
Dear RXISK community,
I want to share something with all the RXISK community.
Today, I decided to step outside my comfort zone and seek some support.
I feel empowered.
I feel positive.
I know that we will all have our voices heard.
I wrote a brief email message to Jeffery Robertson’s firm, who is a human rights lawyer in the UK. I will not give up without a fight.
I know he will lobby for all of us. It is inevitable.
This is what I emailed to him.
Sixteen years ago, my husband and I ingested one tablet out of valium which had very devastating effects.
I have not been given an opportunity to speak up because the processes and systems have allowed me to fall through the cracks.
I believe the batch which was prescribed to me was a counterfeit or manufactured to induce problems.
Took me a long time to make a connection.
I also believe that the Government has not taken any responsibility for what has happened.
I have served my prison sentence ~psychological vilification & character defamation (labelling me as mentally unstable-which are not true). How does one prove their innocence in this complete horror story?
The endless labels which have been put on me are preventing me from speaking the TRUTH.
I am dying inside knowing what I know today however, if someone believed in my story, it would somehow make my life worthwhile knowing that I have done the best I can to prevent tragedies like mine occurring to someone else.
The drug manufacturers have known that benzos’ and other antidepressants induce dangerous side effects however, they have been very negligent in failing to make this known to consumers.
Please do not ignore me because I feel like I have paid my prison sentence and need to get my story out there about how I have been wrongly accused.
How can I let go of something if it had a major impact on my health and whole family?
I am terrified of speaking up because there are powers out there that will not allow me to speak up. I know that my story has to be told so that I can assist with making legislative changes that will benefit all. Seem to be getting no where with my story because everyone is questioning the legitimacy of it.
Would anyone shy away knowing that a drug has severely harmed one. I have received the SILENCE TREATMENT from everyone, when ever I try to bring my case up. This experience seems so surreal and each day I say that if I let it go, I will go to my grave with grave regrets. I am at complete loss with how my matter has been handled.
I will not give up without a fight.
I would appreciate it immensely if someone like Jeffery Robertson would lobby for all us voiceless ‘injured ones.’
In South Australia no one has had the audacity to support me.
With many thanks
Carla Bataljin
PS I know that the universe is going to support all of us.
We deserve the best outcome for humanity.
mary says
Good on you Carla – I’m with you all the way, as, I’m sure, are the rest of us who read or comment here.
It’s amazing how things happen. At 7.15 this morning, I listened to a Welsh language Pause for Thought, given by a young lady whose new blog I recently mentioned on RxISK. In the main, she spoke of ‘fear’ – thinking about the possible fear felt across the waters as America awaits its new President. She finished by saying that ‘fear’ can hold us back; that the way forward is to have ‘faith’ in its broadest sense – and that, by faith, we can explore the possibility of each little one of us being able to make a difference……Now, a few hours later, after considering her words off and on since I heard them, I switched on my laptop – and here you are Carla, the one little voice, standing up with ‘faith’ for what is right. As fellows in the ‘faith’ you can bank on our support at all times. I look forward to hearing more about your ‘marching on’. Good luck.
annie says
Update
https://petition.parliament.uk/petitions/163527
Update Psychiatric Diagnosis Procedures so they are accountable & evidence-based
Psychiatry is under criticism for its subjectivity and unaccountability. Brief crises are defined as lifelong conditions. There is no recognition of this ambiguity. Complaints are seen as symptoms. Patients are misunderstood or slandered. The pessimism of working in a Hospital causes Confirmation Bias.
▼More details
Psychiatry in its present form is based on a one-to-one interview that is then written up from the memory of the person who conducted the interview. This leaves a lot of scope for misrepresentation,and hard evidence such as videotape is not used. Nor is there group inter-rater reliability,but instead the creation of a “United Front” of Professional Vanity to prevent criticism.
“On being sane in insane places” Rosenhan;
“The Psychopath Test” Jon Ronson;
“The Stanford Prison Experiment” Zimbardo
Update
James Moore continues, with an interview with Charlotte Very’ard
https://www.change.org/p/secretary-of-state-for-health-jeremy-hunt-make-pharmaceutical-firms-help-users-who-want-to-stop-taking-anxiety-depression-drugs/u/19058537?utm_medium=email&utm_source=notification&utm_campaign=petition_update
[http://buzz.bournemouth.ac.uk/2017/01/antidepressant-withdrawal/]
And so we swallowed Paroxetine at a time in the 90’s and 2000s when all this was going on and some of us were classified as ‘Subjectively Depressed’ which is an airy fairy opinion at best and a destiny of death at worst…
The Petitions are mounting up..
Update
https://twitter.com/hashtag/ReformMHRA?src=hash
annie says
Update
https://www.change.org/p/house-of-commons-to-disband-the-medicines-and-healthcare-products-regulatory-agency-mhra-a-corrupt-government-body-charged-with-protecting-patients-from-avoidable-harm-in-the-national-health-service-and-in-public-health
Dr June Raine, Director of
Post-Licensing Division, MCA
Market Towers, 1 Nine Elms Lane
LONDON SW8 5NQ
7 June 2000
Dear Dr Raine,
You may or may not have heard that yesterday in Cheyenne, Wyoming a Court found Glaxo SmithKline guilty on several accounts including the count that Paroxetine can cause suicidality, that it specifically did so and contributed to the wrongful death of Don and Rita Schell as well as Deborah and Alyssa Tobin and that the company had been responsible for a failure to test and a failure to warn. You may also be aware of a verdict in the Hawkins case in New South Wales some weeks ago where a Supreme Court Judge made it clear that in his opinion Mr David Hawkins would not have murdered his wife but for the influence of Sertraline.
In the course of my work as an expert witness in Tobin versus SmithKline I got the chance to look at SmithKline’s healthy volunteer database in Harlow. Their characterisation of this for you was that: “There were no reports of suicidal thoughts in any of the volunteer studies. There were few reports of ’emotional lability’, however these reactions were not found to be related to suicidal thoughts or behaviour. Some volunteers reported anxiety, nervousness and agitation while taking paroxetine, however the most commonly reported adverse events were nausea, diarrhoea, drowsiness and insomnia”.
What I found was that approximately 25% of the volunteers in the studies that I reviewed which were all of the healthy volunteer studies done prior to the filing of this drug for registration in the US and in the UK – 34 studies approximately in all. These yielded a 25% agitation, nervousness/akathisia rate. Some of the multiple does studies in healthy volunteers lasting 2-3 weeks yielded an up to 85% withdrawal rate in the volunteers.
All of their healthy volunteer studies were supposed to have been made available to me but not all were. Of the ones that were missing there was trace correspondence left in once indicating that the investigator had never witnessed such a level of problems in a study with healthy volunteers. Another study was a single dose study which in a dose dependent fashion yielded a 75% rate of severe adverse events most of which involved the central nervous system. There were other disturbing indications from one of the other missing studies.
Volunteers who had participated in the programme went on to suicidal acts. The relationship between their intake of paroxetine and later suicidal acts is a matter about which neither you nor SmithKline Beecham should be sanguine.
These studies were for the most part done on company employees. None of the studies bar the missing ones were done by investigators with a background in psychiatry. The investigators were general physicians with a primary interest in gastrointestinal problems who could not have been expected to detect mental problems of this sort that have concerned me and I would have thought should concern you.
My testimony in this case also bore witness to sealed studies and other unreported data. It commented on the Montgomery Baldwin Study which yielded a projected rate of 45 suicide attempts in a group of recurrent brief depressive disordered patients on paroxetine per annum versus 12 on placebo. The figures were not statistically significant in great part one has to suggest because the company had terminated the study early. This termination and subsequent non-publication I would imagine the jury will have found and others will find significant.
Dr Hudson, currently of the MCA, was a witness for SmithKline in this case. He may well be able to give you further details on some of the issues involved. His testimony involved repeated reference to the fact that SmithKline Beecham cannot decide whether their drug had caused problems such as the wrongful death of Don and Rita Schell or Deborah and Alyssa Tobin or the wrongful deaths of many other people whose deaths have been reported to SmithKline even when these reports have been accompanied by the opinions of their treating physicians that the drug had indeed contributed to the problem. Dr Hudson’s testimony was that until controlled trials or other similar studies had proven in general that paroxetine could cause such problems that the company could not make decisions on any specific case.
This appears to me a Black Hole defence. It is entirely conceivable that tens of thousands of suicides could disappear into this Black Hole without either SmithKline Beecham, Pfizer or Eli Lilly being called upon to make any judgements as to whether their drug was contributing to the problem. The lack of evidence from randomised controlled trials or epidemiological studies in this context is not evidence of a lack of a problem. It stems explicitly from failures of SmithKline Beecham, Pfizer or Lilly to do the requisite studies. Both David Wheadon and Christine Blumhardt from SmithKline as well as Roger Lane from Pfizer and Charles Beasley from Eli Lilly along with outside experts such as Daniel Casey and John Mann have testified under oath in the course of the last year that there have been no studies undertaken by any of these companies or others that have been designed to test whether the SSRIs could cause a problem. I believe that this will in due course be seen for the extraordinary state of affairs that it is.
I think what will also be clear is that SmithKline Beecham recognised the presence of withdrawal syndromes in their volunteers from the early to mid 1980s. That withdrawal syndromes occurred at a much higher rate than occur on benzodiazepines. Nevertheless they applied for and have received from you and other regulators a licence to claim that their drug is effective in the prophylaxis of depression and these claims have been based on designs which almost certainly are designs better suited to show the presence of a withdrawal syndrome than designs suited to demonstrate prophylaxis in depressive disorders. A great number of people have in recent years been told that when they begin to feel ill on discontinuing treatment that this is the recrudescence of their mood disorder rather than a discontinuation syndrome from their drug. I would imagine that a great many such people and others on their behalf will feel extraordinarily let down and angry when faced with the evidence that I’ve been faced with.
Yours sincerely
David Healy MD FRCPsych
Director, North Wales Department of Psychological Medicine
http://fiddaman.blogspot.co.uk/2009/06/mhras-june-raine-honoured-with-cbe.html
annie says
This has to be one of my favourite posts..
https://davidhealy.org/42-or-thereabouts/
The *comments* were…pure dead brilliant..
When we moved to Argyll, in the 80s, a Lady pilot and her husband became great friends introduced to me by my partner, an airline pilot.
C and C met at a Welsh primary school and she learned to fly and he engineered.
They started up their own airline in their 20s and bought an aeroplane and did pleasure flights and then cargo traffic all over the world. Just the two of them.
Fanatical about planes and boats their life was ups and downs and their ‘anecdotes’ staggeringly hilarious and mind boggling at the same time..
The scrapes they got into and all this was documented in the most amazing film they made of their love affair as teens and subsequent life as flyers. He did this for his wife…as a memento. He had documented everything from the day they met until they got old..
When I had my baby they were the ones who created so much fun for us with sailing at night and visits to air shows and the like.
When I was placed in the Mental Hospital at the direction of the gp after cold turkey from Seroxat, they were the ones who travelled to visit me.
I remember we sat huddled in a corridor with their concern for me.
After the two years of my prescription drug abuse and so on, C had some sort of breakdown.
Her gp sent her to the same mental hospital.
I visited C and got permission to take her out for lunch.
She was nosediving and crashing in to people’s lunch and was obviously on ‘medication’.
When she left we all sort of carried on, but, our friendship was destroyed because I was so damaged from all those drugs and she was not quite the same either, and so we floundered around for a while but all the old enthusiasms had gone and it was difficult to pick up the reins from where we had left off.
I feel terrible about it now, as friends like C and C don’t come around very often and I often wonder how it is possible to pick up all those friendships I lost because some Scottish Heathens decided that
Seroxat and Suicide would stick to me like glue..
Nobody knew what gps and consultants had done to me because they were never going to own up and neither were their superiors…the long and deliberate cover up affected every area of my life, not just one or two aspects, and it really is quite shamefully corrupt.
“it was terrible what they did to you” remarked my art teacher.
The one who had sat with me in my garden for weeks when all I did was stare in to space..
All through my life I have had remarkable friendships with remarkable people.
At least, this friendship stayed alive..it might be time to go back and collect the losses..
annie says
Dr David Healy, who was prepared to testify in support of reduction of my sentence, has additionally concluded that:
“This case is about as simple and straightforward as it gets, and bears all the hallmarks of a treatment induced problem…I believe there is a strong case to be made, but for the Prozac he took, Mr Danysh would not have killed his father (Emphasis added)
http://www.thepillthatsteals.com/blog/
From Patient to Prisoner
By Kurt M. Danysh
David Healy..essential viewing..
[http://www.kurtdanysh.com/about.htm]
carla says
Dear David,
Without you, many voices would go ‘unheard’.
Listening to one testimony after another testimony, is proof, that these meds are dangerous and that the ‘gatekeepers’ are being totally NEGLIGENT in matters pertaining to peoples SAFETY ~ We already know about this!
All people need to be made aware of the TRUTH and until it is all disclosed, unnecessary MAIMING, SUICIDES & HOMICIDES, will continue to occur.
Thank you David for taking a stand and trying to create an awareness, when no one else was believed.
You are the voice who will shed LIGHT for the VOICELESS.
Thank you, for believing in us and making drug companies accountable. The unnecessary harm these meds induces and the terrible thoughts that rage through peoples minds, whilst on these meds, is a constant reminder that can no longer be dismissed.
Sending you many thoughts of gratitude,
Carla
http://www.kurtdanysh.com/about.htm
annie says
“mouse-killing behaviour”
http://www.thepillthatsteals.com/blog/
Comments (2)
Anne-Marie 20 hours ago
The Zoloft litigation Manual that all Prosecutors have.
https://healthwyze.org/archive/zoloft_defense_manual.pdf
Anne-Marie 20 hours ago
This story is really, really very shocking! I am really sorry Kurt this has happened to you and your family. There should be an urgent inquiry into this, this is so serious. This following bit really has enraged me, it proves to me that they know and always have done.
Lilly has known since the 80’s that Prozac is capable of causing violent behavior, to include homicidality, in some patients. Nonetheless, since 1991, Lilly has conspired with prosecutors to convict criminal defendants who raise the so-called “Prozac Defense.” (1) These efforts include providing expert witnesses at trial (to combat claims that the drug caused the defendants’s violent offense(s) and even financing entire prosecutions. (2)
Other antidepressant manufacturers have followed Lilly’s lead. Pfizer, the manufacturer of Zoloft, went as far as creating a “Zoloft Litigation Manual”, which it prepared “in anticipation of litigation to assist Pfizer’s lawyers, and lawyers in prosecutor’s offices with common interests, in responding to civil claim or criminal defense” claiming that Zoloft induced violent behavior. (3)
https://healthwyze.org/archive/zoloft_defense_manual.pdf
“In the first clinical trial of its kind, Dr David Healy, director of the North Wales Department of Psychological Medicine at the University of Wales, gave Prozac to a volunteer group of mentally healthy adults and found even their behaviour was affected. He said: ‘We can make healthy volunteers belligerent, fearful, suicidal, and even pose a risk to others.’
Healy says between one in 20 and one in 10 people who take Prozac can be affected by akathisia, whereby they become mentally restless or manic and lose all inhibitions about their actions ‘People don’t care about the consequences as you’d normally expect. They’re not bothered about contemplating something they would usually be scared of,’ he said.”
“described as ” Pfizer’s Zoloft Litigation Manual ” and is an exhibit from the Christopher Pittman double murder trial.
Heather says
Annie, you have highlighted a key part of the damage that Seroxat SSRIs and no doubt many other SSRIs and RoAccutane and Lariam (these last two made by ROCHE), do to relationships and our standing socially in the eyes of others, even in some cases, family. The fear that an implied diagnosis of ‘mental’ illness generates in those around the victim tends to drive a wedge in between relationships. Once you are ‘branded’, no one is ever really quite comfortable with you again. And, as Carla has also written, no one will put their hands up to the fact that the medicines caused the severe symptoms which have got you labelled as ‘mentally’ ill. The whole wicked scenario reminds me of the story of the Count of Monticristo who was thrown into jail for life, deteriorated, was hidden away and starved, but by a stroke of luck, found guidance and a means to escape and get retribution, naming, shaming and ruining those who did such a terrible thing to him by persevering with hope and righteous indignation at the injustice done to him, and never giving up. In a sense the RxISK Blog is one excellent way for sufferers to unite and reverse the stigma they’ve so wrongly been labelled with.
By the way Annie, you mention airline pilots. It should be noted that if you have taken RoAccutane-isotretinoin you cannot become a pilot, because of night blindness which can be a side effect, as well as other sight problems. Similarly with Lariam, the anti malarial drug, whose effects are very like RoAccutane, and also made by ROCHE. In Australia, army personnel on Lariam are not supposed to be allowed to fly planes whilst they are on it.
Should anyone, without our knowledge and informed consent, be allowed to mess with our neurology, and then, having rendered us vulnerable and defenceless, have the audacity to deny that they’ve done it, by branding us as ‘mentally’ ill? We call ourselves a civilised society. But surely, like Carla says, this is a crime against humanity and until the herd see and take steps to right it, it is only the injured or their bereaved loved ones who are left to fight for justice.
Heather says
On the Radio 4 BBC ‘Today’ programme this morning, a reference was made to the findings of a recent report on the benefits of CBT in psychosis. The consultant interviewed said it worked by using the brain’s plasticity to change the way it worked, and find a way to deal with difficulties.
This is great, but only, I feel, if the brain is working as a person’s unadulterated mind, free of any use beforehand of psychotropic drugs. Olly did years of CBT. But his mind was already organically messed up/ changed by RoAccutane-isotretinoin and further by SSRIs and eventually anti-psychotics too. He got to a point when he could neither see, read, think clearly, or finally make reasoned judgements in relation to his own personal pain and whether death was his only way out. He could still manage his commercial work, which was automatic after so many years of doing it, and in one sense anchored him to life. But the CBT words on the page did not ‘hit the spot’. He was however shouted at by a psychiatrist who obviously felt that CBT should have counteracted the AKATHISIA he experienced when told to come off Venlafaxine cold turkey. Impossible. You have to have your normal mind in working order to get benefit from CBT, and it won’t be if prescribed drugs have already limited its processing and learning ability.
Better surely to bring in Social Prescribing, good listening companionship, and yes, CBT if it helps, but don’t cloud it’s effectiveness in a cotton wool mush of SSRIs. According to ‘Anatomy of an Epidemic’, the brain on SSRIs is changed within 3 weeks. According to ‘The Pill that Steals Lives’, it need only take 3 days. Wake up and smell the coffee folks.
annie says
Muddy Studies…
http://www.thetimes.co.uk/edition/comment/muddy-studies-9dql0tf55
Making one’s mind; up…
“Psychiatry is at the heart of medicine…
http://www.rcpsych.ac.uk/
Professor Sir Simon Wessely, president of the Royal College of Psychiatrists, welcomed Mrs May’s “new and bold vision”, but added: “We have a long way to go before mental health services are on an equal footing with those for physical disorders.”
Simon Wessely @WesselyS 13m13 minutes ago
Small kittens or large sabre toothed felines? My guest blog on the PM’s speech (no not Brexit) via @mhtodaymag https://www.mentalhealthtoday.co.uk/its-official-there-is-such-a-thing-as-society.aspx
https://www.mentalhealthtoday.co.uk/its-official-there-is-such-a-thing-as-society.aspx
Is this useful, illuminating, brightly lit or anything else…?
The ‘other half’..
Clare Gerada @clarercgp 3h3 hours ago
Last few days to vote for @WesselyS replacement (if he ever can be replaced) as President
@rcpsych – I know who i voted for!
http://www.pinknews.co.uk/2013/11/27/worlds-most-senior-psychiatrist-comes-out-and-says-profession-should-apologise-to-gay-people/
world’s most senior psychiatrist comes out and says profession should apologise to gay people……….how about apologising to the patients, first, Dr. Bhugra..
The Top Jobs; how out of touch are these people and where is their involvement in the Muddy Studies?
It was all very well Dr. Bhugra saying on IAI Madness Incorporated “I love David”, but.
Was he really listening…?
https://iai.tv/video/madness-incorporated
Carla says
Heather said:
‘Better surely to bring in Social Prescribing, good listening companionship, and yes, CBT if it helps, but don’t cloud it’s effectiveness in a cotton wool mush of SSRIs. According to ‘Anatomy of an Epidemic’, the brain on SSRIs is changed within 3 weeks. According to ‘The Pill that Steals Lives’, it need only take 3 days. Wake up and smell the coffee folks.
Carla’s comment:
More like smell the blood on ones hands.
SSRIs is not the only med impacting the brain!!!!
Humanity, needs to wake up to the workings of big pharma.
Do meds really save peoples lives?
In some cases they do however, in other cases you are just being manipulated and controlled by clinicians and big pharma.
Business, will be business, even if it is bl**dy, DIRTY!
annie says
Two Flew Over the ‘Cuckoo’s Nest’…..
U of T’s ‘anti-psychiatry’ scholarship is affront to science and could hurt mentally ill patients, critics say
http://news.nationalpost.com/health/u-of-ts-anti-psychiatry-scholarship?__lsa=f40a-7759
[http://www.oise.utoronto.ca/oise/About_OISE/Bonnie_Burstow_Scholarship.html]
Seriously Canada?
https://twitter.com/himanshutyagi/status/822087252868300803
a colossal embarrassment
https://twitter.com/DrEdwardShorter
Clare Gerada @clarercgp 2h2 hours ago
Another patient started consultation shouting Me. Ill or not would shout at your grocer when buying an apple? Stop it. It hurts us
In my experience it was the other way round, Dr. Gerada…
Heather says
Carla is of course correct, it’s not just about SSRIs, it’s about any mind altering drugs, which take away the brain’s natural ability to reason things out. This applies as much to RoAccutane-isotretinoin, to Lariam – mefloquine (for malaria), as to antipsychotics and benzodiazepines.
Every brain is unique. We are all individuals. What may suit one, may not suit another. The problem we have is that we are being treated like battery farmed chickens. We are all expected to conform to one imposed response by those creating these medicines. And if we dare to question this and report problems, we are shunned and shamed, and contradicted.
We each know ourselves better than anyone else. We know when we don’t feel comfortable, when our body is not working properly. But it is rare that, when adverse reactions to medicines are reported, we are listened to intently and given credence for our own intelligent insights. We need to change the balance of power. Maybe we should all don a white coat and wear a stethoscope, maybe that could make a difference.
Better however not to make chemical solutions our first port of call if we can find another way, preferably by reaching out to empathic others to talk things out. That’s where Social Prescribing scores, because with it comes companionship, an end to feeling alone. A trouble shared is a trouble halved. In the good old days, a psychiatrist might have time to listen to a patient for long enough to make a difference and contribute some helpful insights. Nowadays, mostly, unless you are very lucky, they are firefighting with limited time, so a drug is used to take the place of reassuring words of wisdom. People need to feel cared for, not to be on a production line. We are absolutely not battery chickens.
Heather says
A handy manual written by Vikram Patel MBBS MSc MRCPsych PhD, called ‘Where There is No Psychiatrist’ gives the reader a basic understanding of mental illness and uses a problem solving approach, without using jargon, for 30 clinical problems associated with mental illness. Vikram Patel is not anti drug, but he offers other first resort ways of caring for those who are suffering depression and anxiety. In some countries psychiatrists are in very short supply, but mental illnesses are common and cause great suffering in every part of the world. This book is really aimed at health workers but carers could find this enormously helpful, as well as any of us wanting to help ourselves when feeling mentally unwell.
Carla says
Dear Mary,
Thank you for your kind words of encouragement and support.
It means so much to me.
It takes just one person to act and the rest will be history.
I have complete faith and trust that someone unique will take action, for all concerned.
There is only so much, one can cover up
Exposing the cover ups is something that we are all seeking to come to terms with.
We all have to be positive and try to think what good can come out of all our circumstances.
Thank you, once again, for your kindness ~ much appreciated : )
With Many Thanks,
Carla
Carla says
Dear Heather & Annie,
I love your posts and strong attention to this subject which is considered taboo.
I am sorry, too many lives have been destroyed by these poisons.
I am also sorry that the necessary changes are not taking effect for those who have unjustly died. What more bl**dy proof and evidence do they want!!!!
They have enough BLOOD on their hands!!!!
The very people who are meant to take care of peoples well beings, should be held accountable for their poor and childish behaviour towards those patients who have been maimed or have suddenly died as a result of the poisons they dish out.
Being a health professional comes with responsibility and if ‘duty of care’, is exercised only when the patient complies, with their pathetic treatment plans, then I am sorry to say this: ‘ I do not call clinicians doctors!’
Some doctors mock, control, abuse, chastise, retaliate, undermine, ignore and continuously ridicule patients who have been harmed by these futile meds.
They should be ashamed of themselves for being in the healing profession and then if you do not do as they say they strike you off. (I will not treat you if you do not do as I say!!!!!!!! ~ dictatorship at its best! Run as fast as you can, I say!
Some of you are criminals for the way you treat your patients!
You are better off being in a job where you are not in contact with beings because the way some of your minds operate, is DANGEROUS!!!!!!
I know that the day will come for all of us.
When the tables will be reversed and the WRONGS will be made RIGHT!
I know that those who hand out meds like candy and damn well know what these meds are capable of doing, will be held accountable for neglecting their patients, when all they needed was someone to believe in them, instead of being treated with contempt and dished out more poisons!
As for the drug companies, your day is coming, also!!!!!
If you were all on my pay roll, you would all be handed down a heavy sentence like you have unjustly treated your patients in your care!!!!!!!!
Revenge is bitter sweet.
I actually have pity on those who carry on like children who bully in schoolyards.
For those who manipulate data and continue to carry on this way, the LAW will catch up with you,a;lso!
Sadly, most have still not grown up from their bullying ways.
Yes, the tables will be reversed and all concerned will have their ‘day of judgement!’
This is why the Count of Monte Cristo is so poignant in the strong message it gets across.
Do not underestimate us weaklings.
Kudos for those beings that fight for humanity.
I wonder if those who continue to do the WRONG things are part of the divine human race or TOTAL DESTRUCTION!!!!!!!
Sending oceans of love to all those beings who are trying to do the RIGHT THING!
I <3 you all xxx
Love Carla Bataljin
annie says
More ‘cuckoos’………
GMC/Health Conditions…for Doctors..
http://www.gmc-uk.org/doctors/registration_applications/12972.asp#Tell_About_Health_Conditions
Will you treat my health information confidentially?
We treat all matters about your health in the strictest confidence. We only share information with those who need it to deal with your application, such as the caseworker and the assistant registrar (the decision maker) who is dealing with your application. If the assistant registrar wants advice from a registration panel, your application will also be shared with the panellists.
Our staff and registration panellists have all had comprehensive training on keeping confidential information secure.
It is my understanding that a Doctor can share information about a Patient with whomsoever they like.
They can write referrals without telling the patient:
1. Who they have written to
2. What they said in the referrals
The only way to find out if this is going on with you, is to request your Medical Records.
Then: you should be prepared to be amazed…..(!)
Clare Gerada @clarercgp 2h2 hours ago
GMC guidance on declaring health issues> why is @gmcuk invading privacy in this way? Is it proportional or fair ? http://www.gmc-uk.org/doctors/registration_applications/12972.asp#Tell_About_Health_Conditions
With ‘thanks’ to Clare Gerada…….Dr.
One rule for the Highly Qualified
Another for the Peasant Patients..
https://twitter.com/clarercgp/status/822814521131724801
@clarercgp @gmcuk
Doctors have the same rights to confidentiality as anyone else don’t they?
Clare Gerada @clarercgp 3h
More
@SimonGreasley @gmcuk
clearly not
@clarercgp @gmcuk
The scrutiny of Doctors is ridiculous, doesn’t happen to any other profession, neither does the abuse.
@clarercgp @gmcuk
This is far too intrusive, and rather stigmatising. The GMC needs to pull in its horns a bit.
Only last week I complimented the 7th gp in our rural outreach on his lovely Welsh accent, and, I thought I was having a technical conversation about spores in caravans. A nasal problem I have had since last May, with a monumental nosebleed requiring an ambulance to the site, and, then two hospitals, consultants, etc. Since then, six gps have given me four loads of antibiotics, nose creams, nose sprays, nose steroid drops.
The Welsh gp said, “oh, so you live in one of those things they drag behind cars”….
Holding myself in, we then had a 45 minute ‘consultation’ on his double garage he was building himself, how he was going to build his own log cabin, how he was going to build a detached house on the East Coast of Scotland, himself, ….
I wonder what he wrote in my medical records….how the well-heeled live….
I have my own plans for a Log Cabin, but, decided that was none of his business…
Heather says
Annette Fea, Clinical Psychologist from Queenstown, New Zealand, has recently completed a very interesting and comprehensive Report, entitled
MEDICINES DAMAGING BRAINS – ANOTHER DECADE OF GRIEF
Published recently in the New Zealand Clinical Psychologist Journal 2017.
She has put together an amazing amount of research, and it should be read by all clinicians prescribing RoAccutane-isotretinoin for acne and Lariam- mefloquine, an anti-malarial drug.
‘It has long been established that isotretinoin is highly teratogenic, especially regarding the central nervous system. Fetal malformations, exencephaly, prosencecephaly and hydrocephalus have all been documented (Ludot, 2015). It is such a strong teratogen that just a single dose taken by a pregnant woman may result in serious birth defects (Csoka and Szyf, 2009). Isotretinoin also clearly has an effect on brain function. Altered brain function has been seen in patients treated with isotretinoin using PET scans (Bremner, 2005) and SPECT scans (Werner et al, 2006). “However, in order for a drug to cause a particular adverse event there needs to be a plausible mechanism of action”.(Bremner, 2013). The failure to discover such a mechanism for both mefloquine and isotretinoin, has enabled debates on their safety to rage for almost three decades with claims that because it is not possible to specify definitively how such a reaction can occur, then a causal link does not exist. A number of hypotheses have been offered to explain such a mechanism. If these medicines are causing Hypervitaminosis A in susceptible individuals and stored retinoids are being discharged into the bloodstream in toxic combinations these are then transported to the brain (Mawson, 2013), where they have an observable impact in the striatum, hippocampus, frontal cortex and hypothalamus (as Bremner, 2013, proposed) and the bizarre and complex array of symptoms observed is as expected. This proposal is consistent with the findings of Eturan et al (2012), who concluded from their research that “isotretinoin treatment induces oxidative stress and liver damage”.
This is just one small excerpt from Annette Fea’s report, but surely it shows the ‘causal link’ which Roche have denied, for 30 or so years, leading to so much damage and suicide. Bremner has always said that 21% of frontal lobes can show damage on scans. but in UK the MHRA refused to use his research in the latest government commissioned investigation (Nov 2014)into the effects of RoAccutane- isotretinoin causing mental health damage, and in some cases leading to suicide.
Any followers of the British TV series ‘Call the Midwife’ (BBC 1, 8pm Sundays) will have seen the devastation caused by the use of Thalidomide, and the way, once birth defects starting appearing, it was removed from sale. Bearing in mind that, with a bit of guile, any young person can get hold of RoAccutane-isotretinoin via the Internet, on the MHRA’s own admission as demonstrated by the BBC, it surprises me greatly that unlike Thalidomide, it is allowed to stay available. Indeed, in Annette Fea’s Report, she states that in 2009 in New Zealand even GPs and “vocationally trained” nurse practitioners are able to prescribe it.
Heather says
More excerpts from Annette Fea’s Report:-
‘Medicines Damaging Brains – Another Decade of Grief’.
‘For more than a decade the international media spotlight has frequently shone brightly on the devastating mental health side effects of two popularly prescribed medications. Both isotretinoin (prescribed for acne) and mefloquine (an antimalarial) were introduced to the market in the 1980s by HOFFMAN-LA ROCHE (ROCHE). After much controversy, both were eventually tagged with black box warnings for suicide, depression, aggression and psychosis (Isotrstinoin: Bremner et al 2012) and neurologic side effects that can occur at any time during drug use, and can …..be permanent (mefloquine: McCarthy, 2015). Both medicines have been associated with a string of suicides and homicides. Finally in 2009, after multiple damage claims, Roche withdrew both medications from the market in the United States, denying culpability because the drugs’ precise biochemical mechanism of action in causing neuronal injury is yet to be determined. However, ROCHE’s withdrawal from that market has not resolved the problem, since the medications are still available in other countries, and many generic forms of the medicines are also sold.”
My own personal comment on the points raised by Annette Fea here is this;
Surely, if we saw multiple accidents occurring in a particular brand of car, and if the manufacturers’ defence was that they didn’t really understand the mechanics of their vehicle so although they could see there were thousands of these reported accidents but all the same, it couldn’t be blamed on their design because they themselves didn’t understand why, surely the public, who maybe had suffered horrendous injuries in these cars, would be up in arms, and the cars taken off the road. Government would support them. Trading Standard organisations would support them. An investigation would take place, until the cause of the faulty mechanics were understood, and the cars only sold again when those were righted, or, if not possible, the cars scrapped and compensation paid out by the makers to all those who had suffered. If instead the manufacturers decided to blame the drivers, saying it was up to them to prove whether the vehicle was faulty or not, and that if they had a history of mental illness in their family, they shouldn’t have bought one of these cars in the first place as they were therefore deemed accident-prone, people would be incredulous at the ridiculous nerve of the manufacturers.
And yet, this is what is happening in the drug industry. As AF says, ROCHE withdrew RoAccutane-isotretinoin(Accutane) in the USA, (citing, as I understood it, commercial reasons). They’d had to pay out massive sums in compensation to people who had had to have colostomies following the use of the drug and other complications like suicide. Many cases were finally settled out of court, so they didn’t make news headlines. The drug continues to be available in other countries, and even in the USA you can get it I believe, so long as you read and sign the I-pledge, a form which clearly states that you understand and are prepared to take the risk that this drug may damage you, may even cause you to commit suicide, and you will not hold the makers liable.
This would be like saying, in the case of purchasing and getting into a car, ‘I accept that the mechanics of this vehicle may be faulty, and I could end up in an accident, but I really want this car anyway so I won’t hold the makers to account if it kills or maims me.’ How would one insure it, for a start, if it was known that people had died in these cars but still the faults were not fully understood and corrected?
Does this mean that we care more about standards in the car industry than we do in the drugs industry? AF points out that damage to neurology etc from use of either isotretinoin or mefloquine can be permanent. This means that the life of the sufferer is changed forever, and the ripples from this affect entire families, whose lives are put on hold, to care for them.
Obviously, this situation is happening with many other drugs, psychtropic ones which Annie and Carla have highlighted on this string, in their comments too. I think the only major difference is that young people took isotretinoin to cure their skin, their acne, not their minds. They had no idea it would affect their minds, and myriad other parts of their bodies, irrevocably. And people, especially army personnel, were instructed to take mefloquine (Lariam) to save them from getting malaria, not to drive them into life changing psychosis. I bet they’d rather have had a daily alternative antimalarial than a weekly cheaper. version, from ROCHE.
This in no way lessens the horrors caused to some by any other drugs, but I find it disturbing that ROCHE have produced these two medications for one or two purposes, sell them for dermatological and antimalarial use, and know how many thousands are reporting incidental neurological and other damage, and yet the public, Parliament, and the MHRA, can stand by and let it go on, because, one assumes, of the terrifying financial might of the manufacturers. I remember a Peer of the Realm telling me once that no Government can take on Big Pharma because the latter could afford to bankrupt them in the Courts. So, I guess, those of us who suffer, unsupported, are just collateral damage for the continued rolling of the Pharma gravy train. What a crazy world we are living in.
annie says
Just passing this along to Heather, who mentioned before her interest in CY450
isotretinoin (Absorica®, Accutane®, Amnesteem®, Claravis®, Myorisan®, Sotret®, and Zenatane™) against acne
https://www.madinamerica.com/2017/01/cyp-testing-prevent-dangerous-adverse-drug-reactions/
along with a supportive comment from TRM123 retired UK consultant physician who also made repeated comments in the Gotzsche post she highlighted in blue…and who cited David Healy in his references…
We are all quite aware that we metabolise the drugs differently and even if this test was a reliable indication, I doubt the NHS would invest in every single doctor doing a routine test prior to prescribing and then the $$$ question, who would manufacture it…
On the whole, the NHS et al, don’t believe in side-effects, but, she makes a convincing case for CYP testing and has 18 in her footnotes…?
Carla says
We are all quite aware that we metabolise the drugs differently and even if this test was a reliable indication, I doubt the NHS would invest in every single doctor doing a routine test prior to prescribing and then the $$$ question, who would manufacture it…
I totally disagree with this concept.
I received this classic answer from someone who believes they know it all.
Wouldn’t it be ironic if one day we all find out that big pharma manufactures random flawed batches?????/
Yes, everything is so robust that these things never happen!
It would shatter our whole perception of everything we have been lead to believe.
Robust, what a joke! CB
Heather says
Annie, this information you have ferreted out in the highlighted link from Mad in America, is absolutely fantastic, and just what I needed in order to understand this in detail. I first read about enzyme CYP450 in Katinka Blackford Newman’s groundbreaking book ‘The Pill that Steals Lives’ and for the first time in my life I could see a reason for my own weird psychological reactions to a whole plethora of medicines, and which I guess got me landed with endless problems. The first major problem I had was when I took the contraceptive Pill aged 23, three months before my wedding. It quite simply changed me from a happy, forward looking person into a gloom-ridden nervous, shaky one, who broke off the engagement and was probably judged by my husband-to-be’s mother (and rest of his family) as ‘unsuitable and neurotic’ and sad to say, I guess this reputation, caused but unacknowledged, by a hormone drug, has endured, because they never really got to know me, for mainly geographical reasons, later. However, my deep thinking and caring partner over-rode their opinions, reinstated the engagement, and 45 years later we can look back on a great and supportive partnership. He knew me. They didn’t. He witnessed the effect on me of various medications. They didn’t.
The next horror was hay fever injections which nearly killed me, and then when in A&E, a doctor gave me antiHistamines as an antidote, which left me ‘ a toxic mess’ in the words of my mother-in~law to be – we worked in the Social Service Dept of that same hospital. She saw me lying flat on the floor of my office afterwards, hardly able to stand for some hours. My eyes were affected for months with double vision and I had weakness and extreme tiredness, too sick to work for several weeks. Because of course, presumably in 1971, CYP450 testing was unknown, this was yet another example, for my family-to-be, of my ‘unsuitableness and neuroticism’. Indeed, my poor husband-to-be then, really worried, discussed it with his sister-in-law who advised him to step right out of this relationship because I was obviously ‘unstable’. I don’t think, as she has not had much to do with me since, that her impression will have changed.
I could go on through a list of medications, a hormone given wrongly after the birth of my first child called the Mini Pill, which within 2 days of taking two pills, changed me into a shaking wreck, full of a weird sense of dread, fear constantly in my mind, but fear of what, I knew not. After about three months of this, which developed into suicidal ideation, my GP gave me some Valium (diazepam) for 2 months, and it took the edge off the fear and restlessness. I was looking after my little son who was about 2 years old and at one point really felt he’d be better off without me. My new gynaecologist, who then opened me up to right the damage done after my Caesarean section (the bladder had been stitched up in the wrong position, and the womb too) admitted that the hormone, which I’d been given because I couldn’t sustain a second pregnancy – no wonder as my womb was stitched into the wrong position – he said it would take a year to get my ‘anxiety, induced by hormone pill’ back to normal. And he was correct.
After another pregnancy which was difficult due to the surgical damage that had been done to the uterus in the first emergency caesarean, my second son, Olly, was born, more corrective surgery was done during the next caesarean and we were warned, due to the thinness of the uterus now, not to have more children. Prior to this elective caesarean I was given Valium, and then presumably a muscle relaxant, but to my horror, I was awake and able to feel but not see or talk when rolled into Theatre and the incision began! I will not describe the horror of that, but was able to tell the gynaecologist afterwards the details of his conversation during the surgery! He said they kept the anaesthetic dose low for the benefit of the baby’s safety, and I fully accepted that. I had my baby, fit and well, but I’ve been nervous of general anaesthetics ever since.
Other drugs that have affected me are – iodine injected dyes for MRI scans, antihistamines, some antibiotics, and worst of all, 11 days of Predisolone, a steroid given to counteract an allergic reaction to pollen. That triggered off the same year of dread, shaking, akathisia, as the hormone had done when I was 26, 18 years earlier. I was at that time finishing illustrating a series of children’s books I’d written and my hands were shaking so much after every pill that I couldn’t hold the paintbrush steady. It was a nightmare and the worst part was not being taken seriously by my then GP who advised me to see a psychiatrist as ‘you cannot be allergic to a steroid, steroids are prescribed to treat allergies, not cause them’ (!). I saw instead an allergy consultant physician, who disagreed completely with the GP and said it would take a year ( once again) to get back to normal. It did.
It is therefore quite likely that my children may have inherited this inability to metabolise medications, and may have the same CYP450 enzyme problem as me, because apparently this is likely to be genetic. So no wonder Olly could not tolerate ROCHE’s RoAccutane-isotretinoin, and the cocktail of psychotropic drugs he was later prescribed to counteract the low mood/anxiety/ depression/ paranoia it caused. It probably all remained unmetabolised, affecting his poor brain, body, and his reputation with some of his own and his father’s family.
If only the CYP450 test could be offered to everyone, so many lives could be saved, and personal reputations corrected, because ‘odd’ behaviour, when drug induced but not understood, can result in bad judgements being made, even in families, which can lead to isolation for some for whole lifetimes. Drugs certainly can be a two-edged sword. And so few of us realise this.
Heather says
I also can’t help wondering, when looking at CYP450 enzymes and metabolisation of medication, whether these same enzymes, or lack of them, might be the reason some people (ie me and my son Olly) manifest such awful acne as we did whereas others don’t. Was this because the combination of our hormone structure, which changes at adolescence, made the excess sebum production, which we needed to excrete, limited because we didn’t have enough CYP450 enzymes? So when Olly added ROCHE’s RoAccutane-isotretinoin, which shut down his skin in addition, there was nowhere for the possible impurities in his blood to go apart from gut and brain? Maybe this is a crazy idea?
I see Carla’s point, and the issue of flawed batches is of courses very valid, and having this DNA test wouldn’t help with that kind of horrendous damage, but I do feel that the CYP450 test would probably have saved Olly from RoAccutane-isotretinoin and Seroxat, and all the meds that followed over 11 years of what was hell for him (and for us, watching from the sidelines, confused by his obvious suffering and being blamed for fussing and causing problems). If, when we had appealed to the prescribing psychiatrist via MIND as intermediary towards the start of Olly’s ‘mental illness’, he had listened, Olly might have been here today and thriving. No one ever seems to look at the synergistic effect of several drugs, which is playing with fire, ‘the science of science fiction only’, as TRM123 states in his excellent comment on this Mad in America site. I thought this article was of enormous importance, and if fully understood and put into practice, is bound to save lives. How do we take it on from here and get everyone to wake up and listen?
DWR says
I wanted to add to the paragraphs already quoted on this string about ROCHE medications, from the very recent Report produced by the NZ psychologist Annette Fea. I feel everyone taking these medications should only do so, having at least had the benefit of the new knowledge she has generously made available.
I quote (from today’s excerpt, more to follow)
” There are striking similarities in the biographies of those suffering the mental health ill-effects of both Isotretinoin [RoAccutane or Accutane] and Mefloquine [Lariam]. The list of documented side effects are virtually identical and describe a complex and diverse range of effects on mood, personality, thought, cognition, sleep and behaviour (Nevin and Croft, 2016) including symptoms of anxiety and depression, irritability, agitation, restlessness, acting on dangerous impulses, anger, loss of pleasure or interest in usual activities, sleeping too much or too little,changes in weight or appetite, deterioration in school or work performance, trouble concentrating, mood disturbance, aggression, violence, psychosis ( including confusional states, hallucinations, delusional disorder, depersonalisation, paranoia) and suicidal thoughts, intent and action. On initial presentation, individuals suffering from these diverse effects may appear to be suffering from a potentially wide range of psychiatric disorders that span the diagnostic nosology (Nevin and Croft, 2016), which may confound the diagnosis and subsequent treatment approach. Isotretinoin and Mefloquine have each been associated with mental health conditions which are permanent or fatal.”
DWR comments:-
David Carmichael on Facebook recently shared other additional information he saw published in Toronto newspapers, showing that a spotlight is being shone there now on army suicides and extreme mental illness in those having been ordered to take the antimalarial Mefloquine. We’ve already had questions in our own Parliament last year from Johnny Mercer MP, (who was an army officer prior to becoming an MP) about ROCHE and the stockpiles of their drug which the Ministry of Defence are apparently having to keep using, for presumably financial reasons. Interesting too that General Dannett declined to take it, and didn’t want his own son to use it, when they were in the army even though it was compulsory for everyone else…. He admitted to the BBC (Victoria Derbyshire investigation programme BBC2) that yes, he knew there were problems, army wives and others had alerted him, but he chose to do nothing about it, except of course to make sure it didn’t damage HIS family. We understand there is another antimalarial which does not have these dire reported side effects, but maybe it costs more because you have to take it daily, not weekly, as with Mefloquine. If you don’t run the risk of permanent mental illness induced by the latter, one might reasonably assume that you’ll have a more cost effective result for the NHS in the long run.
Here we go again. Two ROCHE drugs, Mefloquine and Isotretinoin, well reported as having grim life threatening side effects, pushing recipients into madness, and yet no one stops it. MHRA, where are you? Where is your assumed protection of each individual? Worse than that, the cause of the patients’ so-called madness is laid at their own door, and they are expected to prove, in their weakened state, that these drugs caused their illness, whilst ROCHE remain elusive and chant their usual mantra/ disclaimer ‘we take the safety of our medicines very seriously.’ They have got to be kidding.
There is rightly concern expressed this week about the possibility of a Trident missile firing off into an ally’s direction. What about a soldier, driven into psychosis by his antimalarial medication, turning his rifle on his mates. Multiply that out several thousand times, in accord with the thousands of ADRs that soldiers have reported, and the numbers of personnel being invalided out of the service with mental ill-effects. Particularly the nightmare dreams both these ROCHE drugs induce, so that the sufferer gets no peace, even when hopefully at rest. Sleep deprivation is one of the worst forms of torture and can drive people to suicide.
This whole situation is complete and utter madness, and it’s high time chickens came home to roost. The golden eggs laid by ROCHE are rotting inside, and like all bad eggs, are bound ultimately to burst.
DWR says
More from ‘Medicines Damaging Brains – Another Decade of Grieg’ by Annette Fea, Clinical Psychologist, Queenstown, New Zealand.
Annette Fea is covering in her new Report, two medicines produced by ROCHE, Isotretinoin and Mefloquine.
“It has been proposed, independently, that these medications both ultimately cause Hypervitaminosis A (Mawson, 2013 and Bremner et al, 2012). Mawson (2013) hypothesised that mefloquine toxicity is an endogenous form of Hypervitaminosis A induced by liver damage, and the subsequent spillage and transport of stored retinoids, in toxic concentration to the brain. There is a growing body of research showing that Vitamin A doses exceeding nutritional requirements can lead to bioenergetics state dysfunction, redox impairment, altered cellular signalling and cell death, or proliferation (De Oliveira, 2015). However, the exact mechanism by which such molecules exert a neurotoxic role is not clear yet. The psychiatric side effects of the ingestion of excess Vitamin A were recorded as early as 1943 (Rodal and Moore, 1943) in association with the consumption of bear liver. The cluster of symptoms was known as polar hysteria and compared to schizophrenia. In his review of 2015, De Oliveira described how Vitamin A and it’s derivatives, the retinoids, may exert long-term effects on brain areas that facilitate, or induce central malfunction and result in the bizarre array of symptoms reported. Bremner (2012) summarised multiple cases of Hypervitaminosis A associated with psychotic symptoms and linking isotretinoin and psychosis. Goodman (1994 and 1998) had earlier pointed out the link between retinoid dysregulation and schizophrenia, suggesting that dysregulation by retinoids may be an important factor in this aetiology of this pathway.”
DWR says
Correction – please read ‘Grief’ for ‘Greig’
Heather says
I was just Googling RoAccutane-isotretinoin/Accutane this morning, to see if you can still buy in online. You’ll maybe have read on this post that we raised this dangerous issue with the directors of ROCHE in their boardroom during our Protest staged outside their premises in April 2014. We were at that time reassured by them that the MHRA’s job is to monitor and prevent this, that ROCHE only sell to approved (by them) pharmacies, and, effectively, we needn’t worry. Then, when nothing seemed to have changed by 2015, the BBC in their ‘Inside Out- West Midlands’ investigation programme proved that the online access still went on. ROCHE’s drug was being supplied by them to an approved Turkish pharmacy, who were sending it into UK to be sold online, and the director of that firm expressed surprise that there were UK restrictions for sale of this drug, he saying that ROCHE had not told him about that aspect of their sale. He said he’d look into European restrictions but didn’t say he’d necessarily stop selling the drug. He’d apparently been selling it for 10 years! The MHRA were interviewed on the same programme by the BBC’s Jonathan Gibson and admitted that ‘there was still more work to do’ presumably to crack down on this, but adding ‘there will always be criminals out there wanting to get your money’ implying that the faults lay with the silly online purchasers!
Well, I had a look on Google this morning, and there seem to be even more ways of buying this medication online now, 2-3 years later, than there were when we first raised the issue.
If you were a person struggling with cruel comments about your acne, and you read on these sites, as one states, that after 12-16 weeks of use of the drug RoAccutane/Accutane/isotretinoin your skin should be clear, but you must complete the course (it costs over £100), wouldn’t you be tempted? I know, standing in their shoes, if our son had not suffered so horrendously even from his first course, and if I had really bad disfiguring acne, I’d be ordering it, no question.
There is a theory that the brain does not fully mature in its capacity for reasoning till we reach the age of 24. So is it reasonable to expect someone of say 19, or even younger, to really worry too much about possible, supposedly rare, side effects, when very unhappy about their skin. Shouldn’t the MHRA be earning their salaries by protecting them? Shouldn’t ROCHE, who state repeatedly that they take the safety of the use of their medications VERY SERIOUSLY, be protecting them, as they were the original source of supply?
I have to admit this morning to be feeling beaten and depressed by discovering this. I also looked at the Antidepaware site. There we see thousands of suicides and coroners’ verdicts, mostly having taken antidepressant SSRIs. It is reassuringly stated by ROCHE that if after taking their acne drug, one experiences mental disturbance, all one need do is report it to one’s doctor. The implication is that, as though with a magic wand, the GP or even psychiatrist will stop the problem in its tracks. The likelihood is, they’ll offer an SSRI. If you can’t metabolise isotretinoin, odds are that SSRIs won’t be anything but toxic to you either, indeed, the combination of the two can tip you into psychosis. Then you really ARE in big problems. No one will believe that you were not mentally unstable to start with. No one will believe that an acne drug could really cause you to lose your mind. No one will know about ‘polar bear liver psychosis’ – as referenced by psychologist Annette Fea in her Report, as currently being made available on this RxISK Blog. In 1946 polar explorers were reduced to eating polar bear livers for their survival when their food ran out and became psychotic. Those livers were full of Vitamin A, which in large amounts, is toxic. Luckily they didn’t have access to antidepressants as well out there, so we assume they recovered when they got home. (Not sure about this, maybe some became so psychotic that they died). At least it happened to lots of them together, so the cause of their ‘madness’ was obvious. Pregnant mothers have always been warned not to take much Vitamin A as the body does not excrete it like it does Vitamin C when it’s got too much. So how come ROCHE can honestly say ‘there is no proven causal link’ in relation to their drug and suicide? Same goes for Mefloquine, their antimalarial.
I feel really desperate for our young people today. Three decades of controversy over this drug, and still the mental torment and physical pain, leading to death, goes on. I wake each morning with a sinking heart, missing our beautiful inspiring son, who brought such joy into our lives. To have lost him and our purpose for living just because of a dodgy treatment for his acne, seems crazy. What more can we do? It’s as though acne sufferers are approaching a quicksand on a beach, into which some will sink and never get out again. We stand there waving a warning sign, but still they walk into it. And then it’s too late to pull them out and give their their pre-isotretinoin lives back. So we weep for them and with them, as we read their stories on the Internet, waving their own warning banners now, too late for them, but maybe they might save others. We weep furious tears about the whole un-necessary and avoidable tragedy of it all. And nothing changes.
Carla says
Dear Annie, Heather, Mary, DWR and anyone else who I have forgotten to mention,
I am sorry that these meds have impacted your life or the life of your loved ones in very unpleasant ways.
One FACT we all agree with is that these meds do impact the brain and cause grief to many users.
You are all intelligently ‘hardwired’ and intuitively know so much that:
1. some professionals either don’t know about this information, which I refuse to acknowledge
or
2. Conveniently choose to ignore.
These meds are dangerous and if many people swear by them, I have seen some very ‘odd’ and ‘peculiar’ behaviours by those who ingest them.
Sorry to make these observations. I see people not being themselves when they ingest certain meds, even professionals!
It may not be obvious to those who ingest them however, for those who are not on any drugs, one cannot help but notice these odd behaviours.
Are we just becoming complacent and accepting odd behaviours because it is becoming part of the ‘norm?’
if consumers who ingest these meds impact the safety of others, the information should all be laid out on the table, for all to see.
We have all suffered and speaking up gives us the courage and determination to get our stories out heard.
Why don’t I trust some clinicians/lawyers or p**********?
1. You BETRAYED my TRUST!
2. You LIED to me!
3. When I was very ILL you turned your backs on me!
4. When I needed to be with my loved one, you twisted the story around and wanted to call the police for you misconstrued misunderstanding!
5. Some of you can’t handle the TRUTH
6. You strip away all our human rights because some of you believe you are all entitled to maltreat because of your position in society.
I have learnt to steer away from TROUBLE because in my eyes some of you are not WORTHY of respect or RECOGNITION!
If anyone feels intimidated by the words I choose, I have No regrets about what I say.
Until, professionals learn from:
1. their mistakes
2. learn about what some meds are capable of inducing
3. Learn how to treat those who have been harmed by meds with RESPECT
4. Demonstrate some compassion for what many have had to endure,
then I am afraid humanity has a long way to go before we can all learn from these horrible, relentless and unworthy mistakes.
Change comes when the culture changes and professionals begin to ACCEPT the damages these meds induce.
When we begin to put people before profits, POSITIVE CHANGES can slowly diffuse into our misconceived way of thinking!
Heather says
Dear Carla, you have it in a nutshell in your last but one phrase:
‘Change comes when the culture changes and professionals begin to ACCEPT the damages these meds induce.’
Unfortunately, anyone who has remotely demonstrated anything that looks like the ‘odd behaviour’ you mention, is bound to be judged by the self-righteous majority, most of whom are terrified of mental illness (they fear it subconsciously in case they should lose control of themselves too).
So, I feel that that silent majority have been brainwashed into believing that medications are available to ‘put the lid’ on embarrassing outbursts, hiding away the ‘odd’ behaviour, and if one doesn’t work, then lob in another and another, anything to quieten down unseemly emotional behaviour. Until members of that majority become individually aware of the revolving door effects of these drugs, perhaps because someone close to them has been irrevocably damaged by them, they will not want to hear the truth of what is happening. I am afraid this is a fact of life.
My mother-in-law had a terrible deep seated fear of mental illness. She was what used to be called a’lady almoner’ and later became termed a Medical Social Worker. My mother did NOT have a fear of mental illness. She was a nurse, her brother, father, and grandfather were doctors. My mother cared for my father, who suffered a life threatening heart condition, the stress of which had caused him to have bouts of depression, alternating with mania annually – the depression always in the winter months, the mania during sunny weather in the summer. So my mother lived and worked alongside mental illness and knew its challenges, and this gave her realistic insights. My mother-in-law felt mental unwell-ness was ‘all very sad’ but found it embarrassing and wanted to keep it at arm”s length. She also worshipped doctors (in the same way that some people have what’s termed ‘religious mania’ about priests, vicars etc, she regarded doctors as gods). Drugs had saved her husband from TB so naturally too, she trusted drugs, dished out by doctors.
My point is that people judge on what they know, or what they assume. They have fears, based on early experiences. My mother had grown up in a happy large family (4 siblings, loving balanced empathic parents) and she saw illness of all kinds every day coming and going from her father’s surgery. He didn’t flee from it, he did his best to offer means of curing it, or at least, supporting those who lived with it. So she felt it was natural to do her best to follow his example. However, my mother-in-law had a young cousin who suddenly ‘disappeared’ into an asylum when they were both in their teens, and was never mentioned again. We never knew this till she was in her 90’s and let it slip out in conversation. Suddenly her lifelong wary attitude to me, ‘daughter of a manic depressive’ became clear. It was based on fear, laid down in her teen years. Fear of the unspoken, the imagined, the unknown. My mother did not have this fear. She knew there was always a way of coping with every problem, by familiarising oneself with it, learning about it, and approaching it with love in her heart, if that doesn’t sound too uncool to write here.
Carla, you’ve mentioned love a lot in your recent comments on these Blogs. You are clearly and rightly angry about what a flawed batch drug has done to you and your life, but you are not defeated, you keep coming back and reminding us of these dangers because you care and you do this, I feel, out of love for humanity. It’s hard to keep on keeping on with hope that things will change. The awful thing is that until the balance changes, until enough of the silent majority experience for themselves the side effects and addictive problems of psychotropic medications, I can’t see how the horror of so much of what we read on these Blogs will ever end.
Unless we get a miracle. Which is where that Candle Vigil came to mind, on All Souls Night in 2016. For those who work on a purely practical level, a big thank you for your knowledge and your tireless efforts to bring awareness. And for those of us who need to find spiritual hope in the same efforts, to overcome our sense of helplessness in the face of overwhelming odds, keep the love going, for ‘love conquers all’ in the end. Love overcomes fear, always.
DWR says
We learn today (BBC News) that antimalarial medications in Africa are becoming ineffective as the malaria strains are mutating and getting too savy to be overcome by our medications. The drugs which are not working were listed and it didn’t sound as though Mefliquione was one of them. They reported that there was one drug that still worked. If it’s Mefloquine then that will give ROCHE’s sales a boost. Coincidentally too, when there’s so much media reporting going on currently about the dangers of damage to one’s mental health (? Neurology) coming after taking this drug. One can’t help wondering, maybe skeptically, just a little, why today’s news about malaria mutations has hit the headlines at the very time that Lariam / Mefloquine is receiving critiscm.
There was a report about the concerns raised in Parliament about Lariam (Mefloquine) on the Olly’s Friendship Foundation facebook page on 10th Novemer 2015, showing how many army personnel have been badly affected, never mind the general public who take these antimalarials. It describes in detail the interviews with sufferers like Adam Clark, on the Victoria Derbyshire programme at that time on BBC2.
If it turns out that Mefloquine is the ONLY antimalarial that now works (and we are only making an assumption about that today from the little we heard on BBC News), the story will sound like the one we are regularly fed about isotretinoin (RoAccutane) – that it is the ONLY drug capable of effectively tackling cystic acne. Both drugs come from the ROCHE stable.
From this, do we assume that we have to make appalling choices? To make sure we do not die from malaria, must we risk possibly lifelong mental illness with our neurology badly affected? To get rid of disfiguring acne, which can make us feel desperately unhappy and unacceptable, do we have to risk mental illness, removal of damage colons, and many other horrendous physical effects affecting many body parts, aching bones, damaged eyes and extreme cheilitis of lips, all of which end up making us feel unacceptable too, only now we don’t even have the mental resiliance from a naturally functioning brain, to cope. We will have gone round in ROCHE’s Perfect Circle, and ending up worse off than we started.If we can send a man to the moon, can we really not invent a way of protecting against malaria or treating acne, without causing terrible brain and body damage? Is it down to financial cost, research overheads etc? Well. Prozac (fluoxetine) SSRI antidepressant, 20 mg costs Eli Lilly, in active ingredients, $0.11 but costs $247.47 in the marketplace, a mark-up of 224.973%. Xanax (alprazolam) 1mg, benzodiazepine, made by Pfizer, costs $0.024 in active ingredients, costs $136.79 to buy, a mark-up for the drug company of 569,958%. So surely their research costs are very well covered? So why can’t we see some of this money addressing the damaging side effects and working to find better treatments which are much safer?
DWR says
Following on with more in depth information on Mefloquine, (a ROCHE drug),
as it’s in the BBC News today, I’d like to quote this next paragraph from psychologist Annette Fea’s Report, 2017, “Medicines Damaging Brains – Another Decade of Grief”;
“In New Zealand, the medicine Mefloquine is not available and the focus of this update is on isotretinoin. However, it is worth pausing to draw a comparison between the two medications, given the Hypervitaminosis A link and the noteworthy similarities in the histories of these medications and the devastating side effect consequences of their use. McCarthy (2015) completed a critical review of the use of Mefloquine for Malaria, by the Australian Defence Force (ADF). He noted that Mefloquine had been found to be neurotoxic in 2006 and has subsequently been established as a plausible cause of acute and chronic neuropsychiatric symptoms, previously attributed to other causes. Introduced onto the market in the late 1980s, more than 20 million people have taken the drug worldwide. In the 1990s concerns were raised over the frequency of reported hallucinations, psychosis and suicidal behaviour and as early as 1997 the drug was demonstrated to cross the blood-brain barrier in animal models (McCarthy 2015). By 2006 there was direct evidence that mefloquine was neurotoxic (McCarthy, 2015) causing brain stem lesions permanent in nature, in animal models. In humans there has been an alarming increase in the reported incidence of adverse neuropsychiatric effects over time. Several studies published in the early 2000s reported an incidence of mental health symptoms which was 100 times higher than that reported in the 1990s (McCarthy, 2015).”
DWR’s comments:
It’s interesting that this drug is not available in New Zealand. We have met with someone in UK who only took it for a few days prior to going on holiday in Africa aged about 19, and years later is still suffering strange mental symptoms, nightmare dreams, and feeling terrible. We also remember Esther Rantzen doing an investigation into it for the BBC in ?1990, following up many reported similar incidences, people unable to return to work because of feeling so weird, some couldn’t sleep, some had nightmare dreams if they did.
Olly used to love reading Roald Dahl’s book ‘George’s Marvellous Medicine.’ For those who don’t know the story, George has a ghastly Granny and decides to make a medicine that will change her, presumably to make her nicer. He lobs a whole lot of different household chemicals and other stuff into a synergistic mix and doses her up with it. To his amazement, and accompanied by a lot of fizzing noise, she grows enormous and her head pokes out above the house roof. Needless to say, George doesn’t understand what he did exactly. I forget whether he carried the can for it. It seems to us that ROCHE are, in a sense, doing something similar. They are producing drugs which they admit being puzzled by how they actually work, but we have to swallow them down all the same, and however many times the media try to investigate our concerns, the production carries on. It would be interesting to know how many people have to have their normal pre-drug functioning lives compromised long term (or permanently) by ROCHE’s concoctions, for the MHRA and FDA to say ‘enough, ban these two drugs!’ Or is there no limit?
Carla says
Dear Heather,
Thank you for your kindness.
I appreciate everyone’s contribution to RXISK because ultimately we do have an opportunity to make a big difference, perhaps not in the way we would like to see it!
Yes, I agree with you.
Most of us are definitely mentally exhausted.
Coming here to create an awareness, is what keeps us motivated to do what is right.
Many of us have suffered and do not want other souls to suffer the way we did.
So we come here in the hope, that by sharing our stories, somehow we might spare another soul from suffering.
As we all gather here, I don’t feel so helpless, especially after many have done me wrong.
We are all brave souls trying to get out stories out there into the universe.
Yes, we will be:
– Judged
– Crucified
– Treated with indifference
– Continuously mocked
– And I don’t know what the future may hold for all of us ~ it is what we do, in the present moment, that really matters
However, I know, and many other brave souls know, that we do not put a price on someone’s life.
If we have to come here and bravely tell our stories, it is because we do it out of love.
Yes, we pay the price for speaking up however, I would not have it any other way.
We are all interconnected and when we can understand this basic concept, we will all subconsciously fully be aware that what we do is not always about money.
It is about people and what we can do to create a shift in peoples way of thinking.
If many don’t believe us, eventually they will come around.
It takes a few brave souls to create the ripples of change.
Even if those ‘gatekeepers of our safety’ do not do the right thing at the end of the day, our stories will resonate with many other souls and one voice leads to another.
This is what I call love for humanity.
We have to bravely keep soldiering on, no matter what they keep throwing at us.
Yes, Heather, I agree that love ultimately conquers, in the end.
Love and peace to you,
Carla
Heather says
Thank you so much for these words Carla, I’m so glad you agree. I’ve just been watching BBC ‘Breakfast’ and hearing a lady describing her horrific experiences in a mental hospital in, I think, Derbyshire at the hands of a corrupt abusive doctor who used Sodium Amytal on youngsters in the 1960s and 1970s and then abused them. Her book is called ‘The Hospital’ and her name is Barbara (?) O’ Heare.
She said her experiences had made her stronger, ‘in the same way that grief does, you’ve got to get over it, toughen yourself up’. I can’t agree with her there. We who write of our experiences with prescribed drugs on these Blogs are all in some sense bereaved. You say Carla that most of us are definitely mentally exhausted. Even if you have not lost a family member to prescripticide, your old life prior to taking medication is missed daily and grieved for. I’d agree with you about the mental exhaustion. For some I guess it’s just so bad that they shut out the memories and walk away. Others like Carla keep writing, because we must. In fairness to Ms O’Heare, she admitted that once she started writing her book, she found it incredibly healing. I guess it’s the act of doing something to get oneself heard at last, one’s concerns debated, listened to, even if only by those who have suffered too. She’d been inspired by reading the book of a lady who’d been in a similar institution in Kent. She said to herself, ‘if she can do it, so can I.’ Writing eases a bit of the frustration (and in my own case, the furious sadness) that I’d guess most of us feel. So, keep it coming guys…..
DWR says
Back to information on RoAccutane-isotretinoin:
A ROCHE drug.
From Annette Fea, Psychologist, in Queenstown, New Zealand.
Report, 2017 ‘ Medicines Damaging Brains – Another Decade of Grieg’.
“Isotretinoin is a medication approved for the treatment of severe modular acne, but in practice, is often prescribed for acne of mild, or moderate severity. In a 2016 review of the literature on paediatric adverse drug reactions (Cliff-Eribo et al), isotretinoin was the second most commonly reported medication. In New Zealand, adverse drug reactions account for six percent of hospital admissions and 16 percent of claims to the Accident Compensation Corporation. Much research time and effort over the past decade has continued to focus on attempting to prove, or disprove, a direct cause and effect relationship between isotretinoin and mental health disturbance. The psychiatric literature has reported a twenty year litany of well documented case reports demonstrating the clear activation of serious psychiatric disorders caused by isotretinoin. Further studies have provided evidence showing a temporal association between depression onset and drug exposure, challenge and re-challenge cases, evidence of a drug-class effect, dose response and the existence of biologically plausible mechanisms for the association (Mawson, 2013). Therapeutic doses reportedly induce cognitive disturbances and depression in between 1 and 11% of those treated with isotretinoin. In addition, Goodman (2005) identified retinoid dysregulation in the aetiology of schizophrenia. Finally, several studies have shown that Bipolar Disorder patients treated with isotretinoin are at risk for clinically significant exacerbation of mood symptoms, including suicidal ideation.”
DWR says- it was absolutely obvious, within days or weeks after starting his first course of RoAccutane-isotretinoun that our son Olly Roberts, was in a mixed state of mind, different to his normal way of thinking. On the one hand, he was very hopeful that the drug was going to clear his skin of cystic acne, and was quite prepared to put up with putting Vaseline on his lips so he could smile and talk. The ‘low mood’ problem was more limiting, but again, he had been warned about this. He thought it was all par for the course. But it got worse and worse, engulfing him so he became withdrawn and lost in it, sinking into a fog of delusion and sadness, and as he put it later ‘there was absolutely no joy in the little things in life any more’.
It was as though a part of him had died inside. He loved reading Harry Potter at one time, and said this was like the Dementors had swallowed him up. At other times he said it was as though he was on the outside of his brain, trying to look inside. It was as though he was conscious of feeling that his brain didn’t work right any more, words didn’t come out right, memory didn’t spark. He used to say, over and over, ‘I feel so confused.’
After our sons had died, we discussed these symptoms with other bereaved parents. One thing particularly stands out for me. Jon Medland’s father describes a conversation he had with Jon, his medical student son, when Jon also described ‘low mood’, had only been on RoAccutane for a week or two, but said he’d been warned he might feel this way but he was thinking at least it would help him to understand what his future patients would experience on the drug, having felt it first hand. Jon had wanted to be a doctor and help others, since he was 4 years old. He was very highly thought of by his professors, and had almost finished his training. He had never been mentally ill, had a sunny nature and a loving family and girlfriend, with the prospect of getting married. You could say, like for Olly, prior to taking the medication, all was right with his world.
The only difference between the two young men, of similar ages, was that Jon’s acne was mild and Olly’s was severe. Two weeks or so after reassuring his father about his ‘low mood’, Jon had suddenly been engulfed in psychosis triggered by the drug, and had taken his own life. Nothing had altered in his circumstances, except taking the RoAccutane medication. He did report his low mood and was offered antidepressants but had not opened the packaging. This was in 2004, and one would surely have thought it was open and shut proof that the drug had killed him. But no, his parents, shocked and saddened beyond belief, had in that state of grief, to fight medics who denied that there could be a link between his totally out of character behaviour and the drug. And they, like us, are still fighting. Ironically, because Jon said he was feeling a little low, his doctor was able to imply that he’d been depressed, which he never was, till he swallowed the RoAccutane-isotretinoin. You can see from this how cleverly ‘The Perfect Circle’ enables ROCHE to get off the hook. You take the drug, you feel low (a listed side effect on the PIL), you ask for help, you are pronounced ‘depressed’ you take your life, but of course, ‘you only did that because you were depressed’, nothing to do with the fact that this strong, lethal drug, had inhibited the ability of your brain to reason.
And so, as Annette Fea puts it, passes another Decade of Grief, and thousands of youngsters dead. On average one a month according to MHRA figures which we reckon are conservative as there is much under-reporting. The grieving are left to fight on, if they are not too broken, and many of them are. What has happened to them and their young is too painful for some to even write about here, much as they would like to.
carla says
In regards to DWR response on January 27th 2107 at 1.41pm:
I now pose a question to General Dannett.
Why did you and your son have special privileges to decline the antimalarial Mefloquine that all army personnel are subjected to?
You knew about the problems and chose not to do anything about it!
I can’t believe that you protected your son and yourself and didn’t care about the other army personnel.
What was good for you and your son was good for others!
Which brings me to pose another question.
Does the medical fraternity know of safer meds that their patients are not informed about, so that they don’t run the risk of being maimed or dying?
I wonder??????
Is this also happening amongst the medical fraternity?
Shame on some of you if you do!
It is your duty to care about your patients not put them at risk!
Heather says
Carla, when Dannett was interviewed by Victoria Derbyshire on BBC2, she asked him directly, how come he could live with his conscience if he knew Lariam- mefloquine could make people so ill, but he didn’t stop his soldiers having to take it, although he made sure he and his family were safe, by avoiding it. She had him on the spot. He looked embarrassed and lost for words. There was nothing he could really say in his defence, except that the Surgeon General was responsible for advising the Ministry of Defence on this kind of thing, (his name, amusingly, was Lilywhite!)
The other point you raise Carla, about doctors being mighty careful about what they prescribe for their own families, rings true. Our son was prescribed RoAccutane and soon began to withdraw into anxiety and strangeness. He had brought a friend from Uni into his business. And this young man’s father was a GP. I remember talking to him about acne and Olly’s new ‘odd’ behaviour and he said his father had not wanted him to take RoAccutane, he tried an antibiotic but then decided just to have patience knowing the acne would eventually go. I think it likely that doctors would avoid prescribing this stuff, if they are enlightened. Having said that, we had a locum GP some while ago and in course of conversation, the subject of our loss of Olly on RoAccutane-isotretinoin and subsequent SSRIs and antipsychotics came up. “Oh, my daughter took that”, he said. “It cleared her acne quite well.” We asked if she was OK, no side effects? With a grin he said “well, she went completely nuts for a while”. But then she apparently ‘got over it.’ If even doctors can be so gung-ho about mental side effects for their own families, what chance do the rest of us have?
DWR says
More useful information from Annette Fea’s Report – ‘Medicines Damaging Brains- Another Decade of Grief’ published in the New Zealand Clinical Psychologist Journal 2017. This paragraph relates in the main to isotretinoin and mental health.
“Recently Bremner et al (2012) published an extensive review of the literature focused on the mental health consequences of isotretinoin use. Consistent with the research of previous decades, more recent studies and case reports continue to support the contention that “the major side effects of retinoid treatment are those of Hypervitaminosis A syndrome” (Silverman et al, 1987). The last decade has seen a series of new patients severely mentally affected by the medicine. Bremner quoted case after case of those suffering irritability, depression, aggression, personality changes, psychosis, poor concentration, tearfulness, guilty rumination, fears of cancer, bizarre behaviour, drowsiness, loss of appetite and weight, feelings of worthlessness, agitation, relationship distress, suicidal thoughts, suicide attempts, completed suicide, self-harm, fire lighting, mania, manic psychosis. His conclusion was that this medication was associated with a “multiplicity of unusual, sometimes extreme, behaviours”. Again, the similarity of descriptors is eerily consistent with those described in the mefloquine literature. Also consistent with the mefloquine conclusions, have been the more recent isotretinoin reports that such severe psychiatric reactions often occur in the absence of any personal, or family history of mental health problems. For example, Lucca et al, 2016; Rajagoplal, 2014 and Segmiller et al, 2013, all documented cases of isotretinoin induced psychosis in individuals without a psychiatric history. Such findings indicate that it is not possible to predict which individuals will be in the significant minority of those who suffer such consequences. Having said that, there have been many reported incidents of existing psychiatric disorders exacerbated by isotretinoin. Schaffer (2010) reported that nine out of ten bipolar patients treated with isotretinoin in his study, suffered an exacerbation of their psychiatric symptoms. In those patients who are without a history, only headache has been identified as a clear precursor to more sinister brain function problems (Wysowski,2005).”
I set this out, word for word from AF’s Report, because it seems to us essential that people read about her research, and her several sources. After the death of our son, we raised the questions about safe prescribing of these drugs with our local Mental Health and Care Trust, having one or two sessions in discussion with the CEO (Sarah Dugan) and a psychiatrist who did not know Olly, had not worked for the Trust when he was under their care, but was present to advise Sarah Dugan on clinical details.
Our main points were that we were not listened to by the psychiatrist (Lead of Home Treatment Team) when we tried, both verbally and on paper delivered into his hands, to understand that Olly’s problems had started in 2001 when he began taking RoAccutane-isotretinoin. We were ignored when we tried to explain this to him, and he forgets ever receiving our written explanation, although this was duplicated and handed both to him and three members of his team who witnessed it (another doctor, a student nurse and a social worker). They left theirs in front of them on Olly’s coffee table in his flat, but the psychiatrist walked out, carrying his. We still have our own copy. It was 4 years ago but we raised these concerns with the Trust immediately after Olly’s death, (well, in truth, we started doing so before he died but everything was stopped by the Trust when that occurred, presumably for their own internal Inquiry procedures to take place).
The CEO and her accompanying newly appointed lady psychiatrist were unable to give us any real closure on why the RoAccutane information had not been understood and acted upon with compassion by Olly’s psychiatrist, instead of that clinician behaving aggressively and with contempt for the family, in our opinion. Olly described that second meeting with this man (a Head Trainer in NLP as well as a private and NHS psychiatrist) as feeling as though he had been mentally raped. Olly’s emails to us, after the meeting, are heartbreaking to read.
But, on the very important issue of future understanding by psychiatrists of mental symptoms possibly being triggered by RoAccutane-isotretinoin, the lady psychiatrist fell back on the support of the pharmacists and ultimately the MHRA in UK. And this is the scary part; when we met with the MHRA representative in Parliament, with a collection of our MPs and Earl Howe, they were asked to do an in depth report on the safety of this drug in 2014, with particular emphasis on psychiatric issues raised. BUT, when all the bereaved parents asked for the findings of Dr Doug Bremner (USA psychiatrist who had done extensive work on isotretinoin, Accutane in USA), the MHRA lady said his research was ‘flawed’ or words to that effect, his scans were not relevant, and she brushed his work aside like swotting a troublesome fly.
So, it’s important to read about his work, which is backed up by so many others in Annette Fea’s Report on this RxISK Blog. A lot of flies to brush away? If psychiatrists rely on pharmacies’ safety assurances, and they in turn rely on MHRA safety directives, then what hope is there for saving young people like Olly in the future. For the MHRA seem only to be rating the ROCHE assurances of ‘no proven causal links to suicide’ from their drugs (RoAccutane-isotretinoin and also Lariam-mefloquine) and in addition, if Trusts excuse clinicians’ inability to listen to families when they are trying to alert them to drug damage historically, by saying they can’t remember being told, even though it was in front of THREE other Team members, who presumably have also suffered amnesia, then what hope is there for truth and transparency to exist. One could ask ‘who killed cock robin?’ We’d say, first ROCHE, then psychiatrists who didn’t listen or understand the patient’s physical brain damage, and heaped insults on a suffering and vulnerable human being. And then the Trust refused to take any responsibility for any of it.
So the lesson here surely is, don’t EVER risk taking RoAccutane/Accutane/ isotretinoin, because if the worst outcome happens to you, there will be no one to accept any blame, your loss will count for nothing, your case will be swotted away like yet another pesky fly.
DWR says
More from psychologist Annette Fea’s Report, ‘Medicines Damaging Brains – Another Decade of Grief’
Here she writes about the argument put up for isotretinoin being safe and even beneficial. But she shows how wrong this is, and why:
“In contrast, some of the dermatological journals have continued to claim that isotretinoin does not cause, and in fact can alleviate depression. Rehn (2009) supported Kellett’s (2005) findings that there was no increase in depression ((measured on the Beck Depression Inventory), with isotretinoin treatment.
Servando et al (2013) studied a population of 346 patients treated for acne. Using the Hospital Anxiety and Depression scale, the Health Survey Short Form and the Dermatology Life Quality Index, these researchers concluded that isotretinoin is not a risk factor for depression. However, almost a decade ago, Fea (2008) advised that the failure to identify and diagnose disorder in studies like Servando’s was likely attributable to inadequate assessment methods, mainly the sole use of rating scales and questionnaires, which focused on a narrow range of self reported symptoms. When we consider the multiplicity of extreme symptoms described, it is difficult to imagine any rating scale that could provide an accurate assessment picture. However, in the subsequent decade we have continued to see more of the same reliance on self-report scales, which also likely explains the disparity in the findings of the four largest studies (Bremner, 2013). which showed an association between isotretinoin and depression ranging from 1% to 11%. Bremner et al (2013) also concluded that the lack of a finding of an association between isotretinoin (and mental health consequences) in some studies may be due to the lack of standardised diagnoses, lack of patient interview, under-
ascertainment of suicides and the absence of control groups (e g Servando et al 2013). A further complication is the failure of many researchers to assess for symptoms for long enough. For example, the findings of Suarez et all (2016) confirmed the “safety of isotretinoin regarding psychological side effects after administering rating scales after six and twelve weeks of treatment”. Repetitively, those who have discovered significant adverse psychiatric reactions to isotretinoin, have often noted a failure to diagnose these until several months into treatment.”
DWR adds that, as with evaluating efficacy of SSRIs and other psychotropic drugs, the devil is in the lack of detail. You can make studies say whatever you want them to, in particular if you dumb down on what questions you ask, and over what time period you ask them.
DWR says
Now I want to show Annette Fea’s findings on isotretinoin and possible link with suicides. From her Report 2017 ‘Medicines Damaging Brains – Another Decade of Grief’:
“a very recent summary report describing nine patients with isotretinoin-activated psychiatric disorders, noted the onset of these disorders ranged from between one and nine months after isotretinoin treatment began (Hanna et al, 2016).
Sundstrom et al (2010) examined the data from 5756 patients treated with isotretinoin. During a 21-year follow-up period, 2.2% of these patients had a hospital admission for a SUICIDE ATTEMPT [DWR’s capitals here and through this excerpt of AF’s Report]. Sundstrom et al (2010) concluded that “there was an increased risk of SUICIDE ATTEMPTS up to six months after the end of treatment with isotretinoin” and they advised close monitoring for up to a year after completing a course of treatment. With such severe and complex problems with brain function occurring long after treatment is initiated, it is impossible to draw safety conclusions based in pen and paper assessments, implemented just a few weeks after treatment started. Finally, the dermatology literature has caused additional confusion by inferring that the enhanced self-image and quality of life ratings frequently reported following isotretinoin treatment, indicate isotretinoin improves depression. As Bremner 2013 stated “improved self-image does not cure depression”.”
No, it doesn’t. Depression ungulfs you, takes away your ability to care, to reason. However good you might now look, and however glad you might feel, deep down, that your skin looks better, you won’t really care. You can hear all sorts of extraordinary reasons for SUICIDE postulated by members of the medical and dental professions in defence of this appalling drug. One we heard last year was from a very nice and normally intuitive dental consultant who said ” Ah, but could it be that they want to die because they’ve been looking forward to their life changing, getting good relationships when their skin improves having taken the drug, but maybe their life doesn’t improve and their hopes are dashed so they get depressed and decide to die” (!).
We would refer him to the evidence provided to the Inquest in 2016 for David Chow, (whose life was self-ended that year), by Professor Challacombe, a dental consultant at Guy’s Hospital where David’s damaged lips and jaw were treated, over part of the 17 years of agony and disfigurement that that incredibly brave young man suffered. Despite this, he and his father Dr Arthur Chow, an anaesthetist, did all they could through a website they set up, to help RoAccutane-
Isotretinoin users to stay alive and understand what the drug could be doing to them. David had had such severe cheilitis of his lips and problems with the working of his jaw, all caused by ROCHE’s ‘wonder drug’ RoAccutane, that for years he could only eat and drink by using a straw. For much of the time, like our son Olly, he was in terrible unrelenting pain. How amazing that despite this, and indeed Professor Challacombe testifying that in his opinion the drug had contributed to his death, despite all that pain he had devoted himself to raising awareness, with help from his father, and to becoming an acclaimed photographer.
How do we know all this, you may ask? Because we have met with most of the parents of these deeply loved, respected and now grieved for, young people. We have sat with them and heard their gruelling stories, in many aspects similar to our own. We have heard some say they cannot forgive themselves for trusting the lying dermatologists, who in one case, stated when asked point blank by a mother, a well informed nurse, about side effects and suicide, said he had never heard of a case all the time he’d been prescribing it and totally rubbished her concerns.
It is not for us parents to have to suffer guilt about these deaths. Some came as a shock, as in the case of Jon Medland, with little warning. Olly’s did not. He had been telling us his head pain and body aching, and worst of all, his crippling anxiety and ‘fear’ voids in memory and thinking which was making it impossible to go on. We tried to raise the alarm, but no one who could have helped, would. They just followed the script of the NHS/NLP trainer Home Treatment psychiatrist who branded him attention-seeking, and ridiculed him in front of us and others and dismissed our concerns. Maybe this guy truly believed that a bullying hypnotic and highly confrontational approach could over-ride cold turkey withdrawal from Venlafaxine, Zopliclone, Diazepam, and immediately prior to that, having spent many months on Escilatopram. If this man had listened for one moment to us, to learn about the history of use of RoAccutane, maybe he would have grasped the reasons for our son’s long term symptoms. But he was a ‘snap judgement-style psychiatrist’, an ‘I know best, after seeing the patient for just over half an hour’ type of psychiatrist, and worst of all, an ‘I don’t want involvement with family or carers’ type psychiatrist. So, although he professed to be anti-drug, our guess is that he would have dismissed the RoAccutane damage like he dismissed anything else that interfered with his snapshot opinion. And he put our son onto Olanzapine when the akathisia was getting really bad. I wonder if he even knew what AKATHISIA was. Or would even know now. Certainly until recently no one we have talked to on Forms on the Trust he works for, does, or rather, did. We have alerted as many as we can but even there, on one forum, my wife was chastised for daring to raise the subject, it being seen as ‘inappropriate’.
Olly and we were incredibly unlucky. But that’s a good reason for never giving up the fight, to help others as unlucky and bereft as us. And to keep as many alive as we can of those who report suffering damage. As DH stated in a comment on the ‘Accutane’ string about post Accutane sexual dysfunction, yes, it can cause this, “but we are working on it”. Thank God somebody with some medical insight, is.
Heather says
Life is never simply cut and dried is it? When it comes to proving a particular drug led directly to a death by suicide, and in particular, whether isotretinoin can do this, it seems to be very tortuous. To just take the example of insurance for later lost objects, you can find that if you had insurance cover from one well known Company for many years, took this object abroad with you, and also had say, AA insurance cover for travelling in the car abroad, you can find, amazingly, that both policies refuse to pay out for the loss because each says the other one should do it. The bottom line being that it’s the fault of the person insured because, stupidly, even if innocently, they find themselves with two lots of cover. So they get nothing. Well, not without one hell of a fight and lots of grovelling. And maybe, even then, nothing.
With medications, it worries me that the same thing will surely apply, and end up letting Big Pharma neatly off the hook. We used to have BUPA Health Insurance back through the 1970s, 80s and into the 1990s until the Great Recession hit and those of us with mortgages were paying 15% interest! Until mercifully, Chancellor Norman Lamont took us out of the ERM. But having paid £80 per month into Health Insurance for all those many early years in our marriage, by the 1990s, coping with a Recession in the building industry, bringing up a little family, and covering those 15% mortgage interest rates for the duration of the time they were at that level, we decided we had to end the BUPA contract. Despite paying so much in, over all that time, there was no allowance made for a temporary reducing of payments till we could resume the full payment again. Neither was there any chance of unemployment benefit payments as we were self employed. So we diversified into sheep farming and book selling, as well as writing, painting, spinning, weaving and dyeing fleeces, until things got back to normal. It was very hard indeed. And of course, it goes without saying that we cut our outgoings down to the bone. We never bothered with Health Insurance again, realising that for us, it didn’t work. And actually deciding it was something of a con.
In the USA I guess everyone has Health Insurance and can therefore take Big Pharma to task over (Ro)Accutane damage. As we know, there have been many court cases, usually settled out of court by ROCHE after protracted efforts by those who were damaged, to get justice. Millions of dollars have been paid out, for colostomies in particular, suicides and homicides are more difficult to prove, but you can’t argue with a colostomy bag. In UK we do know people who have had this kind of surgery due to RoAccutane- isotretinoin but as far as we know, there have been no court cases, because our whole class action justice system is different. I wish I understood this better.
I have however researched people’s experiences of ROCHE’s drug in many other kinds of chat rooms and forums, apart from places like Acne.org which are routinely and wisely turned to for advice, sometimes though sadly too late. What is extraordinary is that it’s clear, from looking at, say, Mumsnet, that people are very worried about the side effects, which they have heard exist, but they also desperately want their acne to go, and seem to be wanting to be reassured that although it’s nasty at the time, it’s worth it, to get the good skin, and afterwards they should be fine. I think people WANT to be told not to worry. We don’t want to be bothered with possible bad outcomes. In other words, we WANT to be told what we want to hear. Isn’t this exactly what’s going on with reviews of psychotropic drugs too? We are in distress so we want to think no problem will occur for us, it’s only happening for, and reported by, other people who must be a bit nuts anyway – which chimes with the well-chosen words of the BBC TV expert GP Dr Sarah Jarvis, seen on Victoria Derbyshire BBC2 end of 2016. I don’t think any of us reading these Blogs are likely to forget those in a hurry!
There is very little on Mumsnet about ROCHE’s RoAccutane-isotretinoin to make one stop in one’s tracks and think twice about taking the drug. Apart from reports of scary and uncharacteristic behaviour by partners who have been taking it, and the possibilities of these marriages breaking down and ending. The major problem with RoAccutane-isotretinoin is that once it gets into a badly affected person’s psyche, they can become unreachable, paranoid, withdrawn, totally changed from the person they were before, almost like they’ve slipped into dementia, and you can’t reason with them. Their behaviour is strange. Their relatives lose patience with them. Family rifts develop. It’s inevitable, because no one WANTS to believe that an acne drug can drive you nuts.
Then, when the poor temporarily and seemingly deranged patient trots along to the GP, wondering what the hell has happened to them, (but of course still hoping for the promised lovely clear skin), they are given an SSRI, and synergistically, the two drugs can tip them into a mini-psychosis. They do not wake up and see the danger they are in, and neither, it seems, do their doctors. Annette Fea has seen many many cases like this. Patients become delusional, often uncharacteristically ‘religious’. They think they are Christ, or that they are needed in Heaven by God to do important work. This scenario is apparently, according to AF, very common. They see no problem with dying because God wants this. These are people who in everyday life hardly ever went into a church unless for a wedding or funeral.
Now there are two (or even more, if an anti-psychotic is added) medications causing this in the ‘blame frame’. So, ok then, WHICH ONE caused the madness, the acne drug, or the psychotropic drug to cure the acne drug problem of initial craziness? Isn’t this just fine and dandy for Big Pharma? In our son’s case, standing in the ring we have ROCHE on one side, for RoAccutane, and GSK for Seroxat (Paxil) SSRI following on, as a beginning. So, if we had insurance, who would we sue? Wouldn’t they both turn away and say, prove it was our fault and not the other’s, and wouldn’t the patient be lost between a rock and a hard place. No good turning to the doctor either, because s/he must know they are totally stuffed now, and nothing can be done.
Added to that, with suicide, how do you PROVE which factors are at work in the mind to knock out all reason and hope and lead to death? Annette Fea’s Report (2017) shows that polar bear livers containing high levels of Vitamin A caused madness in polar explorers who ate them when they had no other food. So we KNOW the high dose of Vitamin A is likely to drive you into madness, but apparently, even accepting this, it’s not enough.
I remember a conversation I had in 2012 with a good friend whose daughter works for Big Pharma. This young woman, (her mother proudly says), earns a big salary going all over the world, sent by her Agency, to talk about their products In 2012, before our son died, of course I knew so much less than I do know (thanks to RxISK). I couldn’t understand what was causing our delightful, funny, ultra-reasonable son to feel so weird. I shared this concern sitting in her car with my nice friend. “Ah,” she clucked, knowingly ” sounds like he definitely needs help”. In other words, it’s his problem and his psyche that’s at fault. I mentioned RoAccutane and Seroxat. Maybe her daughter doesn’t pass on the nitty gritty details of her work. She must know about Study 329, surely? Much later and after our son died, I wanted to talk to the pharmacologically qualified daughter about the drugs, but was told she was much too busy, jetting round the world to conferences, to see me. I sensed a new wariness in the relationship. I am sad to say, I don’t see much of my friend any more, because I just don’t know how to talk to her. All my trust has gone. Yes, Olly sure DID need help. But not in the patronising way she implied it. It wasn’t his beautiful, intelligent mind which was at fault, not till the medicines, taken so trustingly, got inside his brain. He needed honesty and responsibility from Big Pharma, as did I. But I don’t think that’s coming any time soon.
Heather says
Judging others – why do they succumb to ignoring warnings and swallow down medications? Olly’s favourite quote, from Atticus Finch (in Harper Lee’s ‘To Kill a Mockingbird’).
” you never really know a person till you’ve got inside their skin and walked around in it “.
Very appropriate for the acne sufferer, who wants to look ‘normal and unremarkable’ like everyone else. Of course they will risk ROCHE’s RoAccutane, they’ve possibly tried everything else, they are told this is the magic bullet, the drug of last resort. For some though, it’s the end of normal life, and our dilemma is, do we tell them what they want to hear, with fingers crossed behind our backs, or do we scare them by telling them the truth? I’m for being honest. But this may end all their hope for the future. This is why it’s essential that we learn how this drug is working, so that we can find a way to stop the damage.
Annette Fea’s Report (2017) gives new insights and statistics and we make no apology for setting them out in the RxISK Blog at length. We all need to read and understand this. We absolutely HAVE to end this carnage, and ROCHE have admitted they are not interested in further research or solutions to the horrors they have caused.
Heather says
Another very interesting resource, in trying to understand how these medications are causing so much damage, is the website and blog ‘LastingSides’. I think it would be great if we could link up with them. If you read what ‘Pete’ has written there, you can see further in-depth scientific information, which is very deep but throws more light onto Accutane and also other medications which cause terrible side effects. If you are weighing up whether to take the risk of ROCHE’s drugs, (or any others) do have a look on that site first. Lots of good information.
‘LastingSides’ are trying, I think, to find university researchers, not under the control of Big Pharma, to take things further. I think they’ve mentioned the work done on mice by the University of Bath, which our Group described to Earl Howe at Portcullis House pre the MHRA Report of 2014 which he commissioned. (And which sadly and predictably got us no further on, needless to say), at the time EH intimated that there could be money for new research if we found someone qualified and willing to do it. Now that we are all learning more about enzymes and their role in all this, things are becoming a little clearer maybe.
Dubya_B says
Hello, This is Dubya_B (some of you know me better as Bill) from the Lasting Sides site. We ARE focused on promoting scientific research into side effects from several drugs, including RoAccutane. All affected sufferers and family are welcome to join. We hope to have a friendly relationship with the RxISK team and anyone sympathetic to our cause.
One of our founding members was in contact with Roberto Melcagni, the PI of the Post-Finasteride Syndrome neurosteroids study and potential upcoming Post-SSRI Sexual Dysfunction study. As well as two teams of researchers in the US looking into PFS. There were rumors of money being set aside by the UK government for research into mechanism of action and adverse effects of RoAccutane after the 2014 MHRA hearing prompted by Sir Nick Harvey, Richard Drax, and Michael Thornton. Sufferers from the UK and even some from America contacted these MPs, urging them to take action. The cited stipulation to funding research was that a British or UK institution must do the research. I ask, is this offer still on the table? Are there universities in the UK willing to undertake this task if funding is available?
There also appears to be a lack of communication between the parents of RoAccutane victims and sufferers from around the world. Is there a Facebook group where the parents regularly discusses courses of action?
Hopefully, we can form a united front to put an end to pharmaceutical companies, regulatory bodies, and physicians denying the existence of never-ending misery caused by RoAccutane.
If any of you have doubts on the nonchalant attitude of pharmaceutical companies, you may want see the former Roche USA executive and lead scientist giggling at the thought of birth defects as a result of Accutane during a congressional hearing:
https://www.c-span.org/video/standalone/?174192-3/safety-accutane
Heather says
Hello Dubya_B (Bill)
It was great to find your interesting comment here this morning. Our small group of parents brought about the Westminster Hall Debate in 2013 which led to the Government commissioning the MHRA Report into the Psychiatric Effects of RoAccutane, published in 2014 (and, needless to say, a total whitewash in the opinions of all our Group). We did this with the support of the MPs you mention in your comment, and several others.
If you go to http://www.ollysfriendshipfoundation.org.uk you can see the site we set up in Olly’s name, and at the bottom, listed under resources, are the Facebook links to follow, both to the Olly’s Friendship Foundation Facebook page which we, Olly’s mum and dad set up, and also to the Facebook page for Acne Awareness Group, which was set up by Elliot Brandon’s mum, for the Group too. The latter encourages people to post comments both good and bad about their RoAccutane experience, and the former tells the story of all we personally have done to raise awareness about RoAccutane’s dangerous side effects, but adding in our concerns about other psychotropic drugs. We also keep the memory of our lost children celebrated regularly.
On 24th April this year it was the 3rd Anniversary of our public Protest at ROCHE’s premises in UK, timed to coincide with the Protest in the USA and I have posted about this. You can see that when we made that initial stand, there were SIX lost youngsters; on 24.4.17 there are NINE, and very sadly we learnt yesterday that there is another, so we know of TEN in our small Group. This is of course just the tip of an enormous Iceberg, but our difficulty is how to find each other and then STAND TOGETHER. Many people are so broken by the prescripticide of their children that they don’t feel up to fighting on, which is of course exactly what ROCHE are banking on.
I will try to get in touch privately with you Bill via David Healy as there is information we can share, but not publicly here. It’s very good that we can be in contact. I feel sure by working in collaboration, we can move things forward.
And no, we have no doubts about pharmaceutical companies and their ethics, but thanks for the video!
Heather and David Roberts
Heather says
There was yet another reported death, by prescripticide probably, of a young person last week, who had taken RoAccutane-isotretinoin for his acne for the first time 4 years or so ago, and had never been the same since, according to his parents whose interview with Lucy Bannerman is reported in The Times as follows:
ACNE TREATMENT MADE OUR SON SUICIDAL, SAY BEREAVED PARENTS.
‘A young man who apparently committed suicide never recovered from the side-effects of an acne treatment he took as a teenager, his parents have claimed.
Luke Reeves, 21, had never suffered mental health problems before but his parents, Robert, 50, and Becky, 45, said his personality changed after he took the drug RoAccutane.
They believe the four-month course he took when he was 16 left him irrational, lethargic and eventually suicidal. His family urged other parents to ‘realise how dangerous this drug can be.’ Mr and Mrs Reeves said they wanted to raise awareness of a possible link between RoAccutane and long term depression.
The Medicines and Healthcare Regulation Agency (MHRA) has previously reviewed the drug but says the results were inconclusive. It advises patients to consult their doctor straight away if they experience a psychiatric disorder.
Mr Reeves said, ‘In the medical profession there is no proven link. Luke took the drug at 16 and died when he was 21. They don’t connect it. It is only when you learn how prevalent these stories are, it becomes apparent. He needed more support. We want parents to realise how dangerous this drug can be. We want this to be investigated.’
Luke’s parents were reluctant to let him start the treatment after reading about potential side-effects, but they said they relented because he was so desperate to get rid of his acne.
‘But the odds of a long-term problem seem high with this medication. We saw the side-effects but assumed they were only while they were taking the drugs but for Luke they continued. I thought he was actually getting worse over the years,’ Mr Reeves said.
His mother said that Luke had suffered physical side effects such as becoming so thirsty that they sent him to be tested for diabetes and developing sensitivity to high temperatures. The family also began to notice obsessive compulsive behaviour, such as only wanting to sit in specific chairs. He became reclusive, irrational and stopped socialising. Luke, who lived with his family in Copford, Essex, attempted suicide last summer and again in October, he took his life last month. An Inquest was opened and adjourned yesterday.
Figures from the MHRA showed that between 2012 and 2014, 20 people took their own lives while on the drug. In 2013 James Sillcock, 26, killed himself a decade after giving up the medication. In a note to his parents, he said the treatment had left him ‘in tatters’, triggering his extreme depression.
Ten years ago, 22-year old Jon Medland, a medical student at Manchester University was found hanged in his room after taking the drug.
Rav Seeruthun, medical director of Roche, the drug’s manufacturer, said
“We recognise that severe acne can lead to changes in mood, self-esteem and in some sufferers lead to depression. This is why the information provided with isotretinoin (Roaccutane) carries a warning that patients may experience mood changes, including an increase in depression.”
The information leaflet inside every pack tells patients that before they start taking the medicine they must tell their doctor if they are depressed, or have been in the past. It also says, “However, discontinuation of isotretinoin may be insufficient to alleviate symptoms.”
End of The Times report.
Well, yes, Rav Seeruthun, acne does cause low self esteem which CAN lead to depression, but answer me this….why is it that IF RoAccutane clears up the acne, and the young person now has good (or greatly improved) skin, and thus appearance, why do they get more and more depressed afterwards (as well as during the course of treatment) and why do they eventually become so unable to rationalise that they end their own lives? You’d think, wouldn’t you, that they’d be delighted with the outcome. Something inside them has been messed up, possibly permanently, in brain and body, and it’s far far worse a problem than ever the acne was, however awful the skin was looking. That acne CAN always be treated safely and it WILL eventually heal. It may take a few months or even a year or two, but death, caused by long term or short term damage, is final, and there’s no way back from that. And death, after mental torment, is the most terrible kind of death there is. Ten youngsters now, according to the honestly reported testimonies of their loving parents, who watched the torture of their offspring in horror, sometimes for days, weeks, months or even years, can absolutely swear to that. And these are just the ones we have found out about. What about all those who died (as listed on Antidepaware) who had SSRIs before they died, but did any Coroner ever make the connexion that they may have had RoAccutane-isotretinoin first, which initiated their depression, leading to a prescription of psychotropic medication, which for some is a lethal concoction leading into deeper psychotic episodes. And even if the Coroner did dig deep and discover this, did they use the Section 43 facility, to save others from more suicides occurring? I think we all know the answer to that question without even needing to ask it…..
DWR says
No, not TEN, now we learn from ITV Anglia News that there are ELEVEN, as Luke Reeves’ parents discovered that neighbours of theirs had lost their beautiful son David Perez aged 22 about ten years ago who’d taken RoAccutane too. His mother and Luke’s father sit together and give a brave and moving interview to the TV reporter.
We went out and bought more glass flower candle votives, in case these parents would feel comfortable at some point in having candles for Luke and David lit next to our other nine. I fear we should be laying in a stock of these now as the publicity about Luke and David brings out more accounts of more losses from brave and utterly desperate bereaved parents.
These avoidable deaths are a crime against humanity, inflicted on families who part with wonderful deeply-loved children simply due to the laissez-faire irresponsible attitude of doctors and the lying of Big Pharma. And who do they all hide under the shelter of the almighty wings of? The MHRA. And who is the MHRA accountable to? Governments. And who is the UK Government accountable to? Supposedly us. And there is an Election on June 8th. So they might just care a little, right now, about what we think. Or not.
DWR says
There are other treatments that make sense and have been shown to work, to clear acne. See DMK for example. A young man called Will was featured on the BBC3 film, ‘Dying for a Clear Skin’ back in 2012. He tried the DMK treatment himself, as an alternative to RoAccuyane-isotretinoin. He has made a little YouTube film of the final result, 6 months later, after I think 6 treatments. His skin is wonderful, he is confident and happy. He showed us his first treatment and his last. This was really helpful for anyone suffering acne. Ok, I guess it’s not cheap, but why can’t it be offered instead of RoAccutane-isotretinoin because when you take into account all the hospital appointments and investigations, mental health drugs etc that RoAccutane inevitably kicks off, the cost of all that to the NHS must be massive.
There is also a film made by the dermatologist who invented the treatment. His emphasis is on clearing the skin, opening up its ability to breathe and remove toxins, and finally by adding back the normal protective layer. He had acne himself, he suffered, he empathises. He explains in layman’s terms how acne starts, and the part stress hormones play in it. His process uses enzymes and other state of the art topical treatment, facilitated in penetration by one’s own natural body heat and expertly applied, with the patient keeping up the good work with topical applications of his products at home between the 6 sessions. It’s quite logical and the results seem impressive. Have a look. He says RoAccutane-isotretinoin is a no go treatment. It closes things down, stops toxins escaping, closes pores, messes with hormones. The very opposite of what DMK does.
We ourselves think that additionally watching the diet in case leaky guts allow stuff into the bloodstream which shouldn’t be there, so maybe it comes out in boils and skin eruptions, can for some people be another element to this. Why not try these things both ‘from the inside and the outside’. Will’s experience is very thought-provoking.
Heather says
Just to keep a record of recent deaths on RoAccutane-isotretinoin, Luke Reeves aged 21 died in Colchester about 5 weeks ago, and when his death was in the papers, a near neighbour of theirs got in touch as her son David Perez had died on it 10 years ago. They’ve got together for an ITV interview on Anglia TV. Now tonight another parent in our group says they’ve heard of 2 more deaths on RoAccutane- isotretinoin, in the Havant, Portsmouth area.
Some good news is that Sir Nick Harvey, a really good Lib Dem MP in Barnstaple who got tactically kicked out last time, is standing again for election on June 8th. He was a great mover and shaker on the RoAccutane problem. So a little glimmer of hope there maybe.
With a 650% rise in prescriptions over the last very few years these deaths will keep multiplying too. Terrible for the loving friends and families, but how high does the figure have to go before someone says ‘Stop! Enough!’ Well, I think the powers that be are now swinging the suicides away from the drug, and digging into the personal psyche. “How can you prove its RoAccutane what did it your Honour? Easy, listen to the parents, they know, they’ve lived and breathed and thought of nothing else for years,
peter says
Hi,I was given roaccutane for minor skin problems and was told it is safe,i have been left with permanent side effect depression,damage dry skin,arthritis in all my joints and tendon damage,everybody who has taken this drug needs to see a lawyer,roaccutane is chemo drug and it is illegal to give chemo to some one with out there consent,the side effects show up years after taking the drug,please do not take this drug,and if you already see a lawyer as soon as possible