Five hundred years ago, Martin Luther nailed a set of theses to a Church door calling time on a scam. A scam that had the backing of the political and religious authorities of the day. When challenged his response was “Here I stand, I can do no other”.
Today is Reformation Day. The drama in Luther’s challenge lay in the perception that indulgences were just the tip of the iceberg – the Church had strayed and needed root and branch reform.
Editorial Note: This the first of 3 posts about the idea of a RxISK Map. It is an integral part of the RxISK Prize effort. These 3 posts link closely to the Trick or Treat posts on DavidHealy.org of which the first Vampire Medicines was posted yesterday.
One of the founding ideas of RxISK was that it made sense in the event of something going wrong on treatment to give people their own RxISK report, not quite to nail to their doctor’s door but in the hope this would help move a conversation forward.
The hunch was that having a record showing a problem had been recorded somewhere meant that, unless the doctor was asleep, s/he would be less likely to blow people off. This would level the playing field
But while people have filed thousands of reports, nobody jumped at the chance to get their doctor to file one too.
It seems that while lots of us like our doctor, and lots of us know doctors we like, and we figure most doctors are reasonable, even caring, people, a lot of us also sense many doctors will become nasty if we raise concerns with them.
In the difficulties we have with the system, two issues crop up regularly.
One is – if I say this drug is causing that problem for me, my child or my parent, and the system denies this is possible, how do I validate my perception?
In an effort to solve the validation issue people turn to brain scans or gene tests or blood tests. If I have a piece of paper that shows some abnormalities on some test maybe then they’ll believe me. This is seductive, but a mistake. It diverts from the main issue which is why exactly do you not believe me. Most test abnormalities show what we can live with rather than what’s causing us problems.
The second is related. My doctor is more powerful than I am. I need a politician, journalist or some one to back me up. But if the problem is a new one or one a pharmaceutical company doesn’t accept, then neither politicians nor journalists can help – the only one who can is your doctor – or perhaps a pharmacist.
There is no option but to man up – the way women have done recently with Sexual Abusers. It is never easy to get power to admit it has made a mistake. The tactics women and others have used to level the playing field are the ones needed here.
Drug Wrecks
The term adverse event sounds anodyne. In fact adverse events are the third leading cause of death in Western hospitals and may be the leading cause of death and disability globally.
These events often tear families apart and leave the person affected as isolated as Robinson Crusoe was when he had an adverse sailing event.
Drug Wreck is a better term.
Speaking up about a Drug Wreck is a Tiananmen Square moment. This is the point where you are left looking down the barrel of a tank, wondering if the guy in the tank maybe even agrees with you but realizes his own survival depends on blowing you away. If he comes out of the tank and shakes hands, you both have a problem – where to go now.
Few of those who talk a good talk about horrible drug companies or escalating health costs or even the sanctity of human life are likely to walk the walk and support you at this point.
Just as with the clergy, a dose of political maturity will come over them.
Clinical Psychologists and Nurses see tons of people suffering the ill effects of psychotropic drugs but few raise these issues on behalf of their patient or support them in raising issues.
Campaigners elsewhere in healthcare talk about the need for us to modify our lifestyles – walk more, eat cleaner, or give up alcohol instead of always turning to medication. But ask them to support you if you have memory problems, fatigue or muscle pain on a statin in raising this with your doctor – and they vanish.
The Drug Wrecked are lepers. This makes hanging together and organizing a resistance difficult.
The common interests of the working class meant they hung together until a few decades ago. The common interests of the middle class made them even more successful at hanging together but even they may be losing their grip now.
Women have successfully hung together on certain issues as did African Americans in 1960s America but it has always been difficult to get people to move beyond skin color or the shape of genitals to stopping Wars or engaging with even deeper fault-lines in society like poverty or misfortune.
The Drug Wreck fault line is more primal than class, perhaps as primal as sex. It lies between the fortunate and the unfortunate.
Hanging together is where power comes from, as women have recently shown with Harvey Weinstein. But not even the unfortunate are inclined to hang with other unfortunates.
Stopping the Juggernaut
We’re asking you to stand in front of the tank and hand a report to your doctor and ask him/her to file a view with RxISK. S/he can agree or disagree with the link you figure is present but she must file a report. Disagreement would be like the tank driver getting out to talk to you – it shows an engagement, a human touch.
There are many doctors, nurses and pharmacists who got into healthcare to help lepers and many who still do. These doctors, nurses and pharmacists have in recent years quietly been shifted from medicine into a healthcare inc. which does not see drug wrecks as its business and which will do almost anything to prevent you being rescued if you are washed up on this shore.
It’s not just you therefore who will find it scary when you hand over a RxISK report. The doctor or nurse you hand it to may be just as petrified. (It may be easier for pharmacists).
We are interested in your account of what happens at moments like this. Email us. We can publish anonymous versions on RxISK if you send them.
The object of this exercise is not to terrify your doctor. Its a hunt for doctors who can still listen.
Your action may help a doctor, nurse or pharmacist, who wants to listen, find a way back to delivering Care rather than healthcare products. You make their position much stronger if you present a written report rather than just say something – although they may not realize it at first. You make it possible for them to demonstrate they are being patient-centered which is a value our new systems play slogan service to. Something you and a listening doctor can use to hoist them on their own petard.
There are many more doctors, nurses and even more pharmacists (who in some places can get paid to accept reports like a RxISK report from you) than there once were who will be polite if you hand them a RxISK report. Even though petrified they may give all the appearances of listening. But to qualify as listening, as we are using the word, they have to take a step beyond this and file a report on their view about a possible link.
The reason they have to file their own report and the difference it could make is the subject of the next RxISK map post….
Heather says
Before Martin Luther’s work on translating the Gospels from Latin into German, so that everybody could at last read and interpret them as they thought fit, the priests had been able to blind them with science, putting their own limitations on their interpretations of what Christ had taught, and frightening people into doing what THEY wanted. This is surely exactly what some doctors and, at the top of the pile, Big Pharma, are doing now.
‘If you don’t take this medication, just as I tell you, and you dare to question it, then you will never get better. I am, effectively, God, but I am not going to put it in those words, I am just going to behave as though I am.’
Well, no. Not any more. We have RxISK reports, we have Google, we have each other. We can read, mark and learn. The perceived power of the tin gods is fading by the minute as our groundswell gathers. And how ever much Big Pharma, the BMJ, and the majority of doctors keep singing to the old hymn tune, they will be outvoted in the end.
Don’t forget folks too, our collective effort of lighting a candle each on Thursday night 2nd November at 10pm to stand together for All Souls’ Night, to follow the inspirational words of Laurie Oakley (see on Twitter) and continue what we started this time last year. Just remember where we were then, and where we are now. Yes, much work left to do. Let’s get on with it everybody…..
susanne says
To keep you up to date on contacts – People in poverty tend to receive more prescription drugs so have contacted ‘Health Poverty Action’ last week – so early days – if only those we contact and who are not supportive would send a ‘nono’ with a reason – but very few do! The reason would highlight where more action is needed. eg is it -my organisation is against this/hasn’t sanctioned it /don’t know enough about it etc . Am going to ask those I contact in future if they can give some feedback. Also as an outside chance to Dr Ellen Grant who is a tough campaigner who writes about the adverse effects of HRT but obviously knows a lot about physical systems – it’s worth a punt sometimes as people have networks they may share info with or feel sympathetic enough to donate.
Johanna says
Picked up this news from Twitter about tomorrow night’s episode of “Trust Me, I’m A Doctor” on BBC-2:
https://twitter.com/joannamoncrieff/status/925281662732242945
Will there be a “critical debate” — or just a bit of singing the praises of yoga and gardening, with pills to be reserved for “serious depression”? (Even that would be kind of nice, though hardly worth staying home to watch.) Hopefully my British friends here will let me know.
And thanks for the parallels to 15th century Germany, Mary! Funny thing–I know more than a few doctors who still start babbling in Latin when they want you to stop asking questions and do as you’re told.
Got a client who stepped in a ditch at work and twisted the living hell out of his ankle. Insurance company doctor says they will not pay as his real trouble is “osteochondritis dissecans.” Sounds like you might as well go home & prepare to die — found out it’s basically cracks in the cartilege, related to interference with blood supply. Might be related to minor injuries, but the cause is unknown, basically … or excuse me, Idiopathic.
susanne says
Hi Joanna -Unfortunately Simon Wessley got another chance to be on the telly. Which surely must be annoying for the present president of psychiatrists as it looks as though she is incapable of handling media presentations. The same thing happens when his wife Clare Gerada takes to the stage as past chair of the college of GPs instead of the present one.To be fair Joana Montcrieff made some good points about the needless use of anti depressants rather than to concentrate on helping to solve the reasons behind someone’s depression. J M didn’t unfortunately describe any alternatives. She was described as being a critical psychiatrist from UCL but not a member of the network so gave impression it was just her own opinion. Her practice is not shared by all at UCL so once again it just by the way highlighted how people can be subjected to very different practice according to the psychiatrist’s personal beliefs. And very few will be told what they are when being referred. Very cleverly though Wesley came on after her and was described as the past president of psychiatrists which may have seemed to give him more authority. His statements were outrageously disingenuous, eg he gave the impression there were no serious issues around taking them and that any adverse effects would be mild and soon pass off. Made no mention of withdrawal or serious adverse effects so that people could be more aware of them . The presenter then added his own two pennorth by saying he would take anti depressants himself. The psychiatrist on the team was not asked. He was not exactly representative of the psychiatrist most people encounter in clinics as he strode around being friendly and happy – he was an engaging character – would have been more useful to see him doing a consultation though. The programme overall was presented as serious but jolly entertainment , music, fairgrounds, happy happy you will know how it goes ,because the plebs musn’t get bored and switch off. You were right about the yoga gardening mindfulness all shoved into the hour – with some snips about new research into schizophrenia. Too much in support of the government’s drive to encourage ‘well being’ and self help to nip mental problems in the bud early – nothing whatsoever about the poverty which is driving people into depression and suicide. It was overall depressing because of Wesley’s contribution.
tim says
Neither comfortable, nor convincing documentary to watch Susanne.
Was the bias in favour of S.W. after J.M. really as palpable as I perceived?
Re SSRIs safe and effective promotion: –
S.W. “” —-there’s lots of areas in medicine where we know something works – but we don’t know how”.
–“We knew antibiotics saved lives GENERATIONS before we worked out how they do it”.
But – See Following Reference: –
Mechanism of Action of Penicillin. Joshua Lederberg.
Journal of Microbiology. Vol.73. No 1. p 114. January 1957.
(Accepted for Publication October 1956).
“The mechanism whereby penicillin exerts its cytotoxic effect remains obscure” – – – “However there has been a concordance by many workers —-”
These observations support the argument that penicillin inhibits cell wall synthesis, and thereby provokes osmotic fragility in the excoriated bacterium”.
Penicillin does indeed disrupt the bacterial cell wall.
The first limited availability of penicillin was during 1942/43. Saved many lives on D-Day June 6th 1944.
Does some 12 to 13 years really amount to: –
“Generations before we worked out how they do it”? —
– – Or might this have been well rehearsed propaganda rather than a valid, expert medical opinion as presented by J.M.?
susanne says
Think you hit the nail on the head Tim – it was biased and did sound rehearsed –
annie says
Wessely responds ..
Simon Wessely @WesselyS 53m53 minutes ago
Replying to @AntiDepAware @BBCTrustMe @rcpsych
Did you actually watch the programme you are commenting on and listen to what I said – that we are not sure how antidepressants work?
12:31 AM – 3 Nov 2017
https://twitter.com/WesselyS/status/926351011400310784
James Moore @jf_moore Nov 1
Replying to @rcpsych @BBC
Bravo @joannamoncrieff for speaking out about the concerns we should all have with rocketing antidepressant prescribing.
susanne says
Annie – just read your link – S W admitting on twitter that ‘we don’t know how anti depressants work’ gives an impression of open minded honest thinking….but truth not propaganda by the college is what’s needed . He should have added an admittance that nothing is being done for the harms being caused. Does he manage his own twitter comments – seems he would have time for nothing else if he does. as someone else pointed out SW is all over the place with the help of the BBC, Wonder who the contacts are – perhaps they will be involved in yet another scandal re biased reporting or cover ups one day.
Spruce says
I sent in a letter about six months ago to my ex GP who was one of the doctors along with my ex psychiatrist who first prescribed me citalopram that caused my PSSD.
In the letter i explained that i had developed PSSD, and provided evidence that PSSD exists by sending in various Rxisk pages on PSSD, and i highlighted the studies in highlighters, so that the doctor could see other doctors and scientists supported the idea that PSSD exists etc. I also made a strong case that i was sure my sexual problems were caused by citalopram and nothing else.
I explained how much distress the PSSD had caused me, and how it had gone on for almost a decade, and had often left me feeling suicidal.
I was also almost apologetic in tone throughout the letter, explaining i wasnt angry at the doctor, and that i didnt blame him for me developing PSSD, but that i was just trying to raise awareness among doctors about the condition. (In truth i was quite angry at the doctor, but felt he was more likely to become defensive if the letter had an angry tone).
At the end of the letter i asked the GP to write back to me, and i left my email and postal address. I also asked him to share the Rxisk pages about PSSD among his work colleagues to help raise awareness about PSSD.
Guess what happened after spending hours preparing the letter etc, and sending it in.
Nothing.
Nothing happened at all. No email. No letter back saying he was sorry i had suffered for a decade with this condition. No acknowledgement at all even of the letter, let alone any type of apology for the decade of misery i have suffered.
Nothing.
Daryl says
This is exactly the attitude they have. About as much respect for the people they’ve harmed and whole lives they’ve ruined as Ian Brady and Myra Hindley (the moor murderers). But with the respect and prestige a nazi doctor had working and not caring about their victims.
Not even a response or acknowledgement.
This is exactly the same experience I have found, and still do find. My psychiatrist was supposed to have joint set up ‘the critical psychiatry network’, by the way he has dismissed, been unhelpful and actively societally ridiculed me to cover up PSSD (and refused to warn future people) he’s more like part of the Network For Psychiatry Apologetics Network.
All the doctors and gp’s and everywhere else is just as bad and degrading. I get so angry every time I go to the place that effectively murdered my life, and the disdain and waveful dismissal they have for the lives like mine they have destroyed with their persistent drug all the mentally unyheigenic in the community with toxic drugs and theres nothing you can do about it now program. They actually ruined my life and won’t even apologize or record it on paper (that they record everything on).
It’s very hard to be the peaceful one in all this as the cornered rat, ruining my life is no small feat. I know how the caring would turn that quickly if I had a knife over their testicles. But a childhood lifetime of passifying psychiatry neuro transmission disrupter drugs probably has something to do with me not doing that.
susanne says
Daryl.they do a lot of writing and attending conferences and blogging – but Joanna Montcrieff one of the prominent names is too busy to even answer comments on her blog- …she refused to give one person in enormous distress even the name of a psychiatrist from the so called critical psychiatry network to try and get a referral – in fact put them off even trying I agree with your opinion. The network gives the impression they advocate for a different relationship and practice but are a very exclusive bunch. Who was the one you had such a bad experience with?
susanne says
Spruce – so much for the empathy – if you even had the energy to take it further with that particular group it would probably be claimed that your correspondence had not been received or files had been ‘lost’, You probably know as much as anyone by now but a copy of the correspondence should be on file with new GPs /psychiatrists but I guess debatable whether it’s useful to include the names of those you contacted originally. They can bias things openly or covertly. I think it is legal by the way not only to share the names of helpful doctors but those who have not had up to date knowledge or understanding of adverse effects. To put it at it’s most diplomatic. This is simply saying that they have not enough expertise in this particular problem not that they are bad doctors altogether (although some are). So it does not damage their reputation. People in local areas are advised to ask around for a ‘good doctor’ just how that works out for anyone is debatable – the public needs a register of those with particular experience ,not just an ‘interest’ though that would be a start, and the ability to get a referral. dream on at the moment. The official sites used to record experiences of GPs using their own feedback sites are farcical – but may be worth seeing if they can be recorded on the site. Ditto ‘patients opinion.if anyone feels like trying that it is another thing that needs to weighed up ie whether the reaction from the surgery is likely to be ‘negative’ if there is nowhere else to register. Treading on Eggshells….for fear of another human being’s power to cause harm and distress either physically through drugs or psychologically through ignorance …how does that fit in with a modern health service which is even promoting ‘partnership’???.
mary H. says
In its own way, I hope that this comment links up with Spruce, Daryl and Susanne’s comments.
Shane and I are interested in setting up a Withdrawal from Medication peer support group. To this end, we have prepared a questionnaire to assess the local need and support for such a group. We feel that one of the ways of sharing these out would be by visiting our GP surgery – with permission, of course. On Friday, I emailed the 5 co-ordinators who oversee each patient group there. I explained who we were and which Team we are allocated to along with a short explanation of our aim. To date I’ve received one reply.
Shocking enough that they couldn’t all spare the time to quickly reply, more shocking still is the reason (in my opinion) why one has responded. She co-ordinates the group of which Shane is one of the patients. In the email, I had put an extra bit in hers about Shane’s withdrawal support which includes regular updates and David’s connection there and with Rxisk. She could, therefore, hardly deny the existence of patients with withdrawal problems within her group could she?
To be fair, she didn’t make any mention of such information – her reply was short but very encouraging, it read ‘That sounds really good, I wish you lots of luck with it. I will forward the email to our management team who will contact you with their thoughts.’ Is she passing the buck? I don’t know. As you might have guessed – they are still thinking about it!
As the three of you say, it’s not the lack of agreement that hurts is it – it’s the being totally ignored. I can work with a negative answer but no reply just brings everything to a close doesn’t it, that being the whole idea behind their silence I fear. They know that, should they respond negatively, we will push our positivity further.
I can see a choice of two ways forward in this present battle:-
. they, who have not responded, have left a really negative image of the entire group which stays with me
or
. the one who has responded has shown her own strength of spirit and stood up for what SHE believes, maybe against the general opinion of the whole group.
I shall choose the second option and, failing a positive outcome from the ‘management’ if it ever appears, shall work with the positive one and see where she, alone, can lead us.
susanne says
Fabulous Mary! wishing you all success with a great potential project.
Spruce says
I am not going to be ignored. I will be chasing up about that letter to the GP when i return to the UK, and i will be getting a response to my letter one way or the other.
If the doctor can numb my genitals and wipe out my sexuality for 10 years, nearly driving me to suicide in the process, he can at least have the decency to respond to my letter.
I have also not finished with another doctors surgery which have been very dismissive towards me about PSSD. I will be renewing my efforts about that on my return too.
I suffer every single day. What happened to me was a serious human rights abuse. Why should i just roll over and stay quiet.
Spruce says
This month of November marks 10 years of me having PSSD.
I first took citalopram in November of 2007. Ever since that first tablet my sex drive was completely wiped, my genitals went numb, and my orgasms became almost pleasureless.
10 years.
10 whole years.
A whole decade.
And what do i get to celebrate after this 10 years of misery, i get thrown into a massive wave where my genitals feel as numb as ever. They actually ache with numbness.
I think i am going to have to suggest we all toast to my 10 years of SSRI induced castration.
Carla says
I hope and pray with all my heart, that someday, Spruce, Daryl and many others, who have not had their condition(s) validated, somehow receive that acknowledgement that we have all been waiting for.
Many sufferers, deserve better treatment and I am quite appalled that in this day and age, people who have had their lives ruined, get treated in this uncivil fashion.
You are not alone.
For all that we have been through, today, tomorrow or whatever may come, just don’t lose sight of why we are here.
We have stood in front of that tank, over and over again and have courageously confronted them head on.
We have had no choice but to ‘rattle a few cages’ and show them that we are not afraid to confront issues that have been swept under the carpet for way too long.
We are just defending ourselves and rightfully require acknowledgement, respect, understanding and compassion for what we have been through ~ I do not think we are asking for much!
The lies, cover-up’s, mocking and ignoring us, only reminds a few that we can see beyond all the façade.
It is time that many ‘man up’ and be honest and brave, by acknowledging the ‘wrongdoings ‘of the past.
How on earth are we going to learn from past/future mistakes, if we do not acknowledge them?
Many have had to endure a difficult journey, through no fault of their own and I am glad RXISK gathers the souls to bring hope, light and comfort to each other.
Remember, out of adversity comes opportunity ~ this I believe.
Daryl says
It is not Joanna Moncrieff herself it is just someone else that left the same uni that it was set up from originally in Leeds or something he said he was part of those people so kind of joint set it up or something, that is the only un-insulting conversation we had (I happened to bring in a book once in my hand). I will not reveal identities even though, I am not on a vengeance mission or want to be angry I just want my life back, and some dignity acknowledgement back too instead of mockery and further difficulty and insult would go a long way to stop creating trauma.
Even the Nazi Medical Proffesionals recorded their dam crimes. These ones will not even write “Daryl believes the drugs caused him persistent damage like sexual dysfunction”. It is not like I have not been saying it for the last 7+ years. No records for me or any of the other dead mental patients that crunched their psychiatric drug poisons. All the crimes have been removed from history like they never even existed 1984 style. Why won’t they write it when we ask them too, I am not even asking them to agree just to state thats what I believe.
Im applying for marathons as we speak
susanne says
Sorry if I gave the wrong impression by asking for the name of the psychiatrist Daryl..it was not to publicly shame him/her but if others would want to sent them an account of their own experience to back up what you are saying – it might help to educate and change minds.
Daryl says
No it’s okay yeah you weren’t thinking like that but you never know on the internet.
Its multiple psychs, doctors and ‘mental health’ proffesionals that are involved in this, not just one. I did an PSSD awareness interview and wrote some articles in the meantime. Next stop marathon promotion
PSSD awareness radio interview on longtime activist survivor’s Juliemadblogger radio
http://www.blogtalkradio.com/juliemadblogger/2017/10/22/guest-from-uk-pssd-sexual-dysfunction-from-psychiatric-drugs
Articles:
Antidepressants save millions of lives… Really who told you that?
https://www.minds.com/blog/view/771012332322037760
Yes Mental Health is a scam:
https://www.minds.com/blog/view/771110117310472192
And I added a button to the prize from some of the PSSD transcript interviews like with Rohan, 22 from India
http://pssdblog.blogspot.co.uk/2017/10/a-pssd-interview-with-rohan-from-india.html
susanne says
Daryl…it’s so wonderful to see how much you have done to move things forward. May I say how much I admire the feeling of optimism it stimulates when your broadcast showed how many people are speaking out now. No wonder there is so much propaganda to squash the message getting out. Are the research projects you mention in Milan and Germany ready to get going soon? Is that where the prize is most likely to be allocated? Could we be told more about them?
Daryl says
The one in Germany not enough people have gone through the doctors and handed the forms back we need for entry (although enough entered to say they would), I don’t know if the reason is lack of motivation or difficulty dealing with these doctors (also have to fulfill seemingly impossible task of being given PSSD without a diagnosis of ‘depression’ and other ‘mental health diagnosis’). The German study will not happen if we do not meet this criteria, it is to attempt to confirm the existence of “PSSD” as I understand. Feel free to ask about it on PSSDforum.
The Milan study will I think be doing testing and from what I understood it is likely to go ahead.
Thanks Susanne
I wrote another article on medium mentioning our campaign called
psychiatric drugs are now used to chemically castrate paedophiles
https://medium.com/@darylbrownm/psychiatric-drugs-are-now-used-to-chemically-castrate-paedophiles-d305de438a37
The more claps it gets (you can clap as many times as you like) the more likely chance it has to get seen.
Also just seen there was a Mad In America Podcast interview just done with Dr. David Healy, just about to listen. The link is on the prize page.
Spruce says
Daryl. I was wondering what the study in Milan entails, and what it hopes to achieve etc? Do you know?
If i remember correctly the German study in Ulm is MRI scanning the brains of 40 people who have taken SSRI’s, 20 who developed PSSD, and 20 who didn’t, to see if there are any structural changes between people who developed PSSD and those that didn’t etc.
You say it hopes to prove PSSD exists. Is this correct?
Daryl says
Yeah that sounds right for the German study, to prove PSSD exists. The Milan Study I am not too sure, might have to ask someone on pssdforum but from recollections studying the neurosterioidal changes that occur in PSSD rats or something being one of the things? Depending on money maybe what else will happen with it…
There is a thread on it I think.
susanne says
Has reply from Yellow Card saying info requested on specific adverse effects of anti depressants is now in public domain results up to Aug 2017. Don’t get put off if link unavailable, it is intermittent – had further help from ‘What do they know’ who run Freedom of Information site and thanks to them also and Yellow Card was helpful. There is a lot of breakdown of data eg by age; gender; by patients/carers/profession and reasons for reporting eg psychiatric;gastric. Also suicides and deaths. The info is very interesting. What is needed is to breakdown these categories even further and to give info on long term adverse effects – there is a link to make it easy to report . I tried three different drugs and had to get the alternative name for one – frankly everybody should be given a copy before taking them. I can’t give the results I looked at because the MHRA states that their published info should not be passed on unless the warning at the bottom of the page on adverse reactions is read. Seems sensible so either go through Yellow Card site or directly to- MHRA Interactive Drug Analysis Profile. By the way another problem people report is that symptoms are worse if they are given another named brand than the one they are used to – and this is not taken seriously ……..yet again
mary H. says
I find your last sentence interesting Susanne. Maybe we’re the lucky ones but our local pharmacy will not issue a different brand without discussion with the person concerned – in other words, they take the problem as being real. My experience of this has been with Quetiapine not with an antidepressant. Fairly recently, when Depakote was cleared from the shelves due to the Valproate in pregnancy scare, Shane was transferred to Epilim liquid. Obviously, this was not just a brand change but, even so, another member of the Valproate family. This time there was no check made by the pharmacist, of course, as what was given was as per the script. The reaction in Shane to this change was marked – especially in his mood and he discontinued its use after three doses. I suspect the colouring was to blame but that is just my thought on the matter. Taking the patient’s word when making these changes seems to me to be extremely important. In Shane’s case, luckily, the chemist is still able to source enough Depakote to fulfil his need although the shelves remain empty so far.
Stitch says
I have found the same ignorance from doctors in my area about the harm they caused me. It’s inhumane the hell I’ve been through. I don’t know about writing them a letter to get a response because being ignored would infuriate me even more. I will never let this go but I want to forget it. My hatred for the med community is too big . A large survivor network needs to be established , one that is very visible for all to see. Going through the Doctors is pointless for those already harmed. It’s too much.
Spruce says
Stitch; i have often harboured murderous thoughts to a few horrible doctors who not only caused my suffering, but then ignored and/ or basically laughed in my face when i tried to explain to them what has happened to me because of these drugs.
I have met a few really arrogant doctors over the years, some that have made my blood boil at times.
I would never act on these thoughts, but i have often thought that if i were to, that i wouldn’t have much to lose, seeing that this PSSD might end up being a life sentance for me anyway.
Stitch says
Spruce ) I have had those same thoughts and feelings and for insurance purposes had to see a few doctors. I will never do it again as I fear one day I could snap . At the very least I fear I could assault one of them. So for me staying clear is my only option.
But I pray for your pssd to improve and I hope one day that it does.
Spruce says
Thanks stitch.
I hope one day soon this nighmare will be over too.
Justin (not my real name) says
I’ve just discovered this site, and am encouraged by the fact that a lot of those commenting appear to be UK based (as I am).
I was prescribed “heart drugs” following a life-threatening illness diagnosed as “heart failure”. The drugs saved my life, but practically every one causes chemical castration, and I don’t believe this is a coincidence. I’m convinced it’s intentional.
The drugs listing “erectile dysfunction” as a “side” effect include
Atorvastatin
Bisoprolol
Candesartan
Digoxin
Furosemide
Ramipril
Spironolactone
Warfarin
Also, Bisprolol, Digoxin, Furosemide, Ramipril, Spironolactone and Warfarin list “fainting” among their “side” effects, but whenever I ended up in hospital as a result, they did everything possible to blame it on something other than the drugs.
My belief is that they refuse to file an adverse reaction report because to do so would show the drugs to be far more dangerous than they want us to know.
My heart is now working normally, so I stopped the Warfarin early in April and the rest by the end of May. I now take a Hawthorn supplement, which safely covers the same functions as the drugs they had me on, and I feel much better for it, but it is now late November and the after-effects just won’t go away.
I’m incapable of having a sex life due to erectile dysfunction, get breathless on even slight exertion, have ridiculous amounts of intestinal gas and can do very little of anything because I’m so weak. I drop things because my fingertips are numb, and I’m still getting Warfarin bruises appearing spontaneously. My mental processes too are much slower than they were before I became ill in 2015.
These are just a few of the lasting effects of the drugs which, admittedly, saved my life, but now they’re ruining my life, and I wonder whether the after-effects will ever cease.