Everything’s in Hand: Isotretinoin and the Usual Guff

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January 4, 2020 | 25 Comments

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  1. Main uses of doxycycline

    Acne : after treatment … Isotretinoin toxicity (Controversy)
    Lyme : after treatment … Post-Treatment Lyme Disease Syndrome / Chronic Lyme Disease (Controversy)
    Malaria prevention : after treatment … Mefloquine toxicity (Controversy)

    Overall memory impairment 7 days after a single oral dose of doxycycline 200 mg.
    https://www.ncbi.nlm.nih.gov/pubmed/31615840

    The dose in the mouse experiment is misunderstood.
    Weight conversion is used instead of human equivalent dose conversion.
    Many positive experimental results (eg, neuroprotective effects) are at very low doses.
    Also very similar drug minocycline is the most common test drug that inhibits microglial activation.
    It is known as the main mechanism of synaptic pruning.

    Thank you for reading.

  2. Isotretinoin
    ISOTRETINOIN
    The leaflet is not due to be updated until 2022. That such a dangerous drug has been allowed to be prescribed at all is disgusting.
    BAD claims to be the responsible organisation for the safe treatment of ‘sufferers’ – they have a responsibility to update the leaflet urgently NOW. Parents and others will probably need to kick up about this……

    What are the aims of this leaflet?

    This leaflet has been written to help you understand more about isotretinoin. It tells you what it is, how it works, how it is used and where you can find out more about it.
    British Association of Dermatologists healthy skin for all
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  3. PS Here is a list of their officers should anyone want to enquire whether the BAD leaflet is likely to be updated sooner than 2022.

    HomepageAbout usStructure & FunctionOfficers
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    2019 – 2020
    President
    July 2018 – July 2020
    Dr Ruth Murphy
    Sheffield Teaching Hospitals NHS Trust

    President Elect
    July 2019 – July 2020
    Dr Tanya Bleiker
    Derby Teaching Hospitals NHS Foundation Trust

    Clinical Vice President
    July 2018 – July 2020
    Dr Louise Fearfield
    Chelsea and Westminster Hospital NHS Foundation Trust

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    July 2019 – July 2021
    Dr George Millington
    Norfolk and Norwich University University

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    July 2019 – July 2022
    Dr Anthony Bewley
    Whipps Cross Hospital

    Honorary Secretary
    July 2019 – July 2021
    Dr Tabi Leslie
    Royal Free Hospital

    Assistant Honorary Secretary
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    Dr Bryan McDonald
    Royal London Hospital

    Editor BJD
    Dr John Ingram
    July 2019 – July 2024
    University Hospital Wales

    • David and Heather Roberts have a leaflet which is likely to be far more useful for patients – it’s called ‘Dying for a Clear Skin’ and tells it as it is!

      • Thanks Mary for mentioning this. If anyone interested goes to http://www.ollysfriendshipfoundation.org.uk and on the Home Page, clicks on the word ‘Roaccutane’ it takes you to our Protest and Information Page where you can see our core group of parents on our Protest Demo (24.4.14) outside the manufacturers, along with our downloadable leaflet, which we have upgraded several times since, to stress also the sexual dysfunction element which has become more prominent over the last 5 years due to persistent campaigning by our group. We have printed and handed out thousands of these leaflets to interested parties since then. I hope, by raising awareness, we have saved lives.

        The drug is only supposed to be offered to those with severe cystic acne. My son and I both had that kind of acne. It was affected by food intolerances and healed by sunlight. RoAccutane helped him a bit, but after each course, it returned worse than ever. The same thing has happened in other cases. What healed him was Blue Light and when all settled down, laser treatment. He was successful in his own business and could afford it. He was a very independent and principled person and refused our offers to pay for it for him, but this treatment only crossed his radar after he consulted a doctor dealing with it. His mind however, was severely changed over several courses of RoAccutane isotretinoin prior to that. Then a crude and ignorant psychiatrist with no interest in the effects of the drug, shamed him into suicide. Olly had rotten luck. But his story, and his charity, can now help to save others. A silver lining, one might say.

  4. Interesting and very extraordinary phrase in the 2014 report about how ‘acne whether treated by isotretinoin or not, is associated with psychiatric disorders’. I was and am part of a group of parents, bereaved by this drug, who got two Westminster Hall debates and a meeting with the MHRA to cause this whitewash of a 2014 report to be undertaken. If we assume that a very high proportion of teenagers get acne, do we therefore assume then, from this, that they all first suffered psychiatric disorders? Or if not, if the acne caused the supposed psychiatric disorder, then why, if Government tell us they care so much about the rising numbers of youngsters manifesting supposed ‘mental illness’, why then are we not having research into acne ITSELF, the root causes, and it’s prevention?.

    Anyone with acne is going to wish it had not afflicted them. Does that mean they are mad? None of the group of a dozen or so parents we work with, all bereaved, and then the dozens more fighting to keep their kids alive, none of them would say their kids ever had ‘mental illness’. We may have had a few with Aspergers, (that’s not madness, look at Ms Thurnberg ), we may have some like our highly intelligent and very normal son who have been bullied horrendously at school for their skin, but they are not mad, they have to deal with bastards who probably do have problems or they would not get a kick out of doing this. Our kids may just, understandably, end up with PTSD. Bullying will of course come back to bite the bullies one day, so they themselves are possibly mad not to realise, but not everyone would run with that idea I know.

    Thanks for setting out the MHRA’s brief. That is the most helpful part of all this. I’ve realised it since we sat round a table with them in Portcullis House in 2014. My ever optimistic husband kept hopefully giving them the benefit of the doubt. Till very recently. We had a few arguments about it, not any more. They are just a distraction. You are correct, they must feel that the deaths and the figures of same are all very sad but, one assumes the MHRA and NICE consensus is ‘ heyho, they are dead, aren’t they, and they had acne so, like stated earlier, they must all have been psychiatric cases anyway….tough but sad, let’s move on’…

    Except, no, they weren’t. There were a fantastic bunch of young folk. I write about them every week on Facebook on ‘Olly’s Friendship Foundation.’ They all have a white Ikea lantern with their name on in green lettering, on my kitchen windowledge beside a table of African violets, a mini garden of memory. It’s a 1.6 metre wide window, but it’s full, we are onto a second row now. We parents came from all walks of life and parts of UK and USA now united in a club we never asked to join. Every birthday, every death day, there is a post on our Facebook page about one of them. The next one is this coming Tuesday 7th, Joshua, from the USA. He was not suffering mental problems. We just had one through Christmas, Jesse. He did not have mental problems. They come up repeatedly on this site, week after week, you can read about their attributes, their good lives (pre Accutane use), their potential, and most of all, how loved they were and are. All lost to this prescribed drug. Or should we say, according to the MHRA, killed by their acne?

    I am very worried about the thousands still just about alive in the living hell this drug causes, mostly medically unacknowledged, by messing up their brains and bodies. What can we do for them, to keep them alive, till someone in the industry fesses up about HOW this drug is zapping their minds and bodies and points us to a cure. And admits cause and effect. Because until that happens, these poor people feel that they are going mad and no one believes them. And yes, Dr Healy, the doctors are the ones passing out the lethal prescriptions. So why don’t they stop? .
    Because the dermatologists tell us that apparently don’t have anything better to offer. For ‘better’ read, ‘as cheap, as dramatic, or as quick.’ And once their skin patients go crazy, they are a psychiatric problem, ‘but, heyho, maybe they always were’, so pass them on to that specialty, drug them some more with SSRIs and gradually, like with our son, into suicide, sad, but, ah well, another one gone so the problem disappears. It’s perfect really, the Final Solution, The 4th Reich. See ‘RoAccutane and The Perfect Circle’ on the RxISKblog. People like us have been scratching our heads in disbelief about this drug, Susanne, since 1982. We need The Final Answer. We cannot afford to lose them, all these wonderful young folk, especially after a Dementor-like period of months of intense suffering

    And if anyone has access to a means of saving them, please report it here because I’ve got so many who contact us who need help, NOW. Before they die like Olly did. Hence his Olly’s Friendship Foundation, and all he tried to do to find answers, in his tragically short life. The MHRA can go fiddle whilst reality burns.

  5. The advice given by most sites is unreliable and dangerous including BAD (British association for Dermatologists) who have the most ‘authority’ as well as NICE’ Great Ormond Street hospital for children needs to get on to it quickly

    HomeConditions and treatmentsMedicines informationIsotretinoin
    Isotretinoin
    Isotretinoin is a retinoid, which is a type of Vitamin A. It is commonly used for the treatment of severe acne. Retinoids are thought to influence the way in which cells grow and develop, and prevent the production of specific genes that may cause cancer.This page from Great Ormond Street Hospital (GOSH) explains what isotretinoin is, how it is given and some of the possible side effects.

    Isotretinoin is a retinoid, which is a type of Vitamin A. It is commonly used for the treatment of severe acne. Retinoids are thought to influence the way in which cells grow and develop, and prevent the production of specific genes that may cause cancer.

    It is known to be effective in the treatment of a number of different types of cancer. It has recently been shown to improve survival in patients with a stage four neuroblastoma.

    Isotretinoin is also called 13-cis-retinoic acid, which is available as 10mg and 20mg capsules( and 20mg/ml oral liquid if you are on a clinical trial) . There is now also a liquid formulation available as part of a clinical trial for patients with neuroblastoma.

    Soya allergy – Isotretinoin capsules contains soya. If your child is allergic to soya he or she should not take isotretinoin. Please tell your doctor who will be able to discuss possible alternative treatment with you.
    How is it given?
    It is given by mouth as a capsule or liquid. You should give one dose to your child twice a day for 14 days in a row, followed by a break of 14 days. Your doctor or pharmacist will tell you how many capsules to give.

    This 28-day course is usually repeated five more times. Giving the treatment in this way has been shown to be the best way to achieve maximum effect with the minimum of side effects.
    What are the side effects?
    Drying of skin, lips and eyes
    Moisturisers and lip salves containing vitamin E should be used during treatment with isotretinoin, ideally even before the skin and lips become cracked and dry.
    Sensitivity to sunlight
    Your child’s skin may also become more sensitive to sunlight. Your child should avoid being exposed to sunlight and other forms of ultraviolet light.
    If they do go out in the sun, always use a good sunblock (SPF 50 or higher and wear a hat).
    Changes in liver function
    Isotretinoin may change how well your child’s liver works. These changes may happen rapidly. Blood tests (LFTs) will be taken to monitor your child’s liver function during treatment. Please contact your doctor immediately if your child complains of pain in their right side or the whites of their eyes or their skin develops a yellow tinge.
    Increase in blood fats
    Isotretinoin can cause raised levels of some fats in the blood (triglycerides). This will not have any noticeable effect. Blood tests will be taken and doses adjusted if necessary.
    Effects on the unborn child
    Isotretinoin must not be given to girls who may be pregnant or are likely to become pregnant in the near future. If your daughter is ten years old or older, we will ask her about her periods and any possibility that she could be pregnant. We will also carry out a pregnancy test on a fresh urine sample. If your daughter is sexually active, she must use a reliable form of contraception.
    Bone marrow suppression
    There will be a temporary reduction in how well your child’s bone marrow works. This is unlikely to have any noticeable effects.
    Interactions with other medicines
    Some medicines can react with isotretinoin, altering how well it works. Always check with your doctor or pharmacist before giving your child any other medicine, including medicines on prescription from your family doctor (GP), medicines bought from a pharmacy (chemist) or any herbal or complementary medicines.
    Giving isotretinoin in a mixture at home
    You can mix the medication with ice cream, yoghurt or similar food like chocolate mousse, as below. You should do this away from bright sunlight.
    Assemble all the equipment you will need:
    gloves (disposable or household)
    a small pair of sharp, clean scissors (to be used only for this purpose)
    a dessert spoon
    a teaspoon
    a small tray (this can be plastic or disposable cardboard)
    small portion of ice cream, yoghurt or chocolate mousse
    kitchen roll – kept just for this purpose
    a sharps bin
    a plastic medicine pot
    Put the on gloves.
    Remove the capsule from the blister pack and put the required number of capsules for each dose into the plastic medicine pot.
    Place the dessert spoon on a clean surface.
    Take a capsule between finger and thumb and hold upright firmly
    Working over the tray use the scissors to cut the tip off the capsule and then carefully squeeze the contents on to the dessert spoon.
    Note: If the capsules are too hard to cut, try putting them (still in their foil packaging) in the plastic medicine pot with some warm water for a minute or two.

    Discard the empty capsule in the sharps bin.
    Use the kitchen roll to wipe any drug from the gloves and then dispose of the used kitchen roll immediately in the sharps bin.
    Repeat for each capsule needed.
    After all the required capsules have been snipped, use the teaspoon to place some soft ice cream, yoghurt or mousse onto the dessertspoon.
    Using the teaspoon mix the ice cream, yoghurt or mousse with the medicine.
    Give the medicine to your child.
    Clean all equipment, including scissors and gloves (if using house-hold gloves) in warm soapy water.
    Put the disposable gloves in the sharps bin. Wash your hands thoroughly.
    Return the sharps bin to hospital when full.
    Note: This medicine is very thick and sticks to the sides of nasogastric tubes. Even if you usually give medicines to your child through a nasogastric tube you should try to give this medicine by mouth. If you have difficulties please ask your nurse or doctor.
    Accidental spillages
    If you accidentally spill the contents of the capsules or mixture on the work surface or floor, wearing gloves, cover the spillage with kitchen paper. Wipe the area with water then clean with household cleaner and water.
    If the mixture gets onto your skin, you must wash the area immediately, using plenty of water. If the skin is sore you should contact your GP (family doctor) for advice.
    If the mixture accidentally gets into your eyes, wash with plenty of running water for at least 10 minutes. If your eyes are sore after this, you should go to your nearest Accident and Emergency (A&E) department.
    If the mixture is spilt on clothing, the spill should be blotted dry with kitchen paper. Clothing should be removed immediately and washed separately from other items. Used kitchen paper should be disposed of as above.
    Used paper towels, masks, vomit and dirty disposable nappies should be placed inside two rubbish bags and disposed of along with your normal rubbish.
    If any type of spillage occurs you should contact GOSH for advice immediately.
    Important
    Keep all medicines in a safe place where children cannot reach them.
    Isotretinoin capsules should be kept in a cool, dry place away from direct sunlight or heat. Keep the capsules in their original packaging.
    You may be able to obtain further supplies from your Shared Care Centre. Ask the pharmacist when you collect your child’s prescription. You cannot get this medicine from your GP or local community pharmacy.
    Do not give your child any other medicines that contain Vitamin A, while they are taking isotretinoin. If you are not sure about other medicines, please ask your pharmacist, doctor or nurse.
    You should handle these medicines with care, avoiding touching the capsules where possible. If you are pregnant or think you could be pregnant, please discuss handling instructions with your doctor, nurse or pharmacist. Please see our Special handling requirements information sheet for further details.
    If you forget to give your child a dose and it is within a few hours of when the dose was due, give it as soon as you remember. Otherwise, do not give this dose but wait until the next dose is due. Do not give a double dose.
    If your child vomits straight after taking the dose, inform your doctor or nurse, as your child may need to take another one.
    If your doctor decides to stop treatment with isotretinoin or the medicine passes its expiry date, return any remaining medicine to the pharmacist. Do not flush it down the toilet or throw it away.
    More information
    Great Ormond Street Hospital (GOSH) switchboard: 020 7405 9200
    Pharmacy medicines information: 020 7829 8608 (Monday to Friday from 9am to 5pm)
    Compiled by:
    The Pharmacy department in collaboration with the Child and Family Information Group.
    Last review date:
    October 2019
    Ref:
    2019F0213
    Disclaimer
    Please read this information sheet from GOSH alongside the patient information leaflet (PIL) provided by the manufacturer. If you do not have a copy of the manufacturer’s patient information leaflet please talk to your pharmacist. A few products do not have a marketing authorisation (licence) as a medicine and therefore there is no PIL.

    For children in particular, there may be conflicts of information between the manufacturer’s patient information leaflet (PIL) and guidance provided by GOSH and other healthcare providers. For example, some manufacturers may recommend, in the patient information leaflet, that a medicine is not given to children aged under 12 years. In most cases, this is because the manufacturer will recruit adults to clinical trials in the first instance and therefore the initial marketing authorisation (licence) only covers adults and older children.

    For new medicines, the manufacturer then has to recruit children and newborns into trials (unless the medicine is not going to be used in children and newborns) and subsequently amend the PIL with the approved information. Older medicines may have been used effectively for many years in children without problems but the manufacturer has not been required to collect data and amend the licence. This does not mean that it is unsafe for children and young people to be prescribed such a medicine ‘off-licence/off-label’. However, if you are concerned about any conflicts of information, please discuss with your doctor, nurse or pharmacist.

  6. This takes the biscuit, out of ‘one more Cornetto’

    https://www.dailymail.co.uk/news/article-7830129/Ten-suicides-year-linked-powerful-acne-drug-Roaccutane-figures-show.html

    More State-Sanctioned, Murder?

    From Acne?

    All these drugs, whatever it is, knocking-off the public, and there is no-one in charge?

    All the workers, who should see it, are confined by their narrow job description, going about their business, oblivious?

    It seems astonishing and remarkable that Pharma continually gets away with blaming the patient for depression and anxiety, when millions are caterwauling ‘it’s the drug’ and all we all get is the Usual Guff..

    After a four year investigation, GlaxoSmithKline were not prosecuted by the MHRA.

    Roaccutane seems to be going the way of all ‘Health Scares’…

    Scare the patient, half to death, and, in the process, deny, deny, deny

    The ‘Ranks’ are ‘Closed’ to anyone, who has told anyone, ‘it’s the drug’?

  7. The French national cohort clearly shows that it has reduced suicide risk [https://www.ncbi.nlm.nih.gov/pubmed/31098637].
    The period covered was after minocycline was no longer used (Removed from indications and guidelines.).
    The Swedish cohort study by Sundström Probably used minocycline.

    Doxycycline is considered a suicide risk close to minocycline, but water-soluble limecycline does not appear to increase suicide risk as much.
    The use of limecycline in France may have halved the risk of suicide during subsequent isotretinoin use.

  8. Annie, thank you kindly for the article you submitted regarding RoAccutane.
    Indeed, very educational!
    It would be difficult for many to correlate health issues to their prescribed medication(s) because sometimes the side effects or adverse reactions are not always immediate, like other medicines.
    Hence, it would always be viewed through the medical professionals opinion as coincidental.
    I believe that many people have been maimed or passed away from ingesting this drug however, it has not been the probable cause.
    We all have to be mindful that many medicines are causing harm and inducing unnecessary diseases and death.
    We all have to try to better understand why are so many being harmed.
    We can NEVER GENERALIZE and say that it will never happen to me!
    Let’s look at the CAUSE and EFFECTS and PREVENT future suicides.
    Too many people have lost their loved ones and there needs to be MEASURES put in place to STOP these unnecessary suicides from occurring.
    Suzanne wrote:
    However, if you are concerned about any conflicts of information, please discuss with your doctor, nurse or pharmacist.
    With all honesty, are many going to tell us the TRUTH about medicines that harm?
    Sadly, there is a conflict of interest when one goes against the grain.
    Heather, kudos to you for giving the gift of Olly’s Friendship Foundation to other people who need comfort, support and awareness about issues regarding this unsafe medication.
    I believe your invaluable contribution will definitely create the necessary changes you have long been waiting to hear.
    It just takes time…………………….but how long can we wait!

    https://www.youtube.com/watch?v=LGjt291COa0

    • Carla – hope you didn’t think that was my advice re discuss conflict of interest with your doctor….’! It’s the cynical message people are given when very rarely will they get an unbiased second opinion..which is supposed to be an entitlement.

    • Carla, thanks for the song, it hits the nail on the head. Time IS running out. Sometimes the thought of how much time and effort we’ve all devoted to putting forward common sense solutions to turn around these ghastly situations, absolutely wearies me. Another New Year, another MHRA mulberry bush to run around and another load of ‘guff’ from the drugmakers. Or should we say, the rug merchants. Round and round we go. It’s hard to keep hope for change alive.

      Stefan Lay, who back when aged 21, wrote his marvellous ebook called ‘RoAccutane -The Truth’ is still suffering many years later, but still bravely describes what happened to him, despite feeling too tired to think out solutions any more. He’s just done a brand new YouTube video ( link to follow) which is absolutely brilliant, even with bits of ironic humour thrown in, which made me hoot with laughter, awful as it all is; he’s got it SO right. But what can we offer him, and all the damaged others? It shouldn’t be his job and theirs, weary as they are, to still be searching for cures. It’s hard enough for each drug damaged person to get through another day. I’d like to feel, Carla, that something will change things soon, but like you say, how much LONGER can we all be expected to wait?

      Could it actually be that the underlying Pharma idea is for natural selection to take over? If we can’t tolerate these medications and we die, that’s ok because the ones that can, will be the ‘fittest’, evolved and deemed worthy to survive? In the end, anyone sensitive to these poisons maybe is expendable, and the robotic rest will create our new world. Now there’s a cheerful thought for the New Year…..

  9. By the very best experts in covering it up and whitewashing? Or for real?

    If Accutane injured have trouble getting recognised then what hope could those treated for mental health have.

    If anyone was interested in the harm they have caused they would have apologised years ago. Have spent 10 years telling the mental health treatment centre the medications have permanently broken my dick and the gabapentinoids they additionally plied me with as a teenager are now a street drug and all purposefully ignore what I said for 10 years.

    If anyone was interested they would have apologised already by now.

    Okay for some to assault others but not okay for me to. Only the law protects that behaviour.

  10. Hi Suzanne,
    Sorry, I did not intend to make others think that you wrote it.
    If symptoms persist or get worse, please see your doctor ~Is this not a classic example of what they put in the drug pamphlets!
    This whole ‘Merry Go Round’ of medicine is not about healing. It is sometimes about finding a cure (if any), for the problems that some medicines or procedures, induce.
    It just makes no sense to me!
    A medicine, supposedly, goes to fix up one problem and creates a dozen other problems.
    Are we ever warned about the hidden RXISKS?

  11. I decided to write to ask those who issue guidelines for this horendous drug what they intend doing in the light of thebm article’s serious warnings.
    RE: Isotretinoin They do aftert all make life – and death decisions. I do
    agree Heather – it has always been suspected that some lives are dispensable either by prescribing harmful drugs which cause deaths or disability leading to the scrap heap .or infertility
    Letters below

    M. Firouz Mohd Mustapa
    11:19 AM (10 hours ago)
    to me, John

    Dear Susanne,
    Could you kindly identify who you are and from what perspective(s) have you written about this matter?
    Thank you.
    With best wishes,
    Firouz
    Dr M. Firouz MOHD MUSTAPA
    Clinical Standards Manager
    British Association of Dermatologists
    Willan House
    4 Fitzroy Square
    London W1T 5HQ
    020 7391 6359
    firouz@bad.org.uk
    http://www.bad.org.uk

    I haven’t replie yet but will do. Just cageyness – no infromation at all offered even to someone expresses worry about the drug.Just answer the question! everybody has a right to know the answer. When as a member of the NICE cttee (at least by 2014)are the guidelines to be updated and promoted by BAD?

    From: John Ingram
    Sent: 07 January 2020 11:05
    To: Susanne -c: M. Firouz Mohd Mustapa
    Subject: RE: Isotretinoin

    Dear Susanne,
    thanks for highlighting the ongoing debate surrounding isotretinoin for acne. I should explain that the BJD does not commission the writing of guidelines and rather we publish them on behalf of the British Association of Dermatologists (BAD) and other guideline producers when we receive submissions.
    So please accept my apologies that I cannot help with your query. I have copied in Dr Firouz Mustapa, who helps to coordinate guideline production on behalf of the BAD, who may have more insights.
    With best wishes,
    John
    Dr John Ingram MA MSc DM FRCP(Derm) FAcadMedEd
    BJD Editor-in-Chief

    From: Susanne –
    Sent: 06 January 2020 18:38
    To: John Ingram
    Subject: Fwd: Isotretinoin

    Dear John Ingram

    I am writing to you as editor BJD to ask whether you and your colleagues are proposing to up date the guidelines sooner than 2022 in the light f the new evidence published in thebmj?

    (I am not a patient. I would very much appreciate a soon response)best regards

    Susanne
    (His website asks whether correspondents are patients or academics..i am sure I would still be waiting for a complete fob off if stated -a ‘patient)
    ———- Forwarded message ———

    From: Susanne
    Date: Mon, Jan 6, 2020 at 2:03 PM

    Subject: Isotretinoin
    To:
    II am concerned that the next reviews of guidelines have been stated as programmed for 2022. In the light of this latest publication in thebmj – can you let me know if this will be updated more urgently. Parents are of course as well as others, very worried that it is still being prescribed.

    Thank you If you can reply asap I would be grateful
    Susanne –
    Reply from NICE – as ususal they are terribly busy and will respond in approx 5weeks

    Have also written to Great Ormond St Hospital for children who prescribe the stuff for youngsters to ask if they will be alerting parents. No response yet.

    -iotretinoin: experts convene to investigate new concerns over suicide risk
    BMJ 2019; 367 doi: https://doi.org/10.1136/bmj.l7085 (Published 31 December

    The Medicines and Healthcare Products Regulatory Agency’s isotretinoin expert working group had looked at the risk of psychiatric adverse reactions suspected to be associated with isotretinoin in 2014, but it has now reformed to look at more recently reported adverse reactions. In 2019 12 deaths were recorded among people to whom isotretinoin had been prescribed, 10 by suicide

    The working group will include experts in clinical pharmacology, psychopharmacology, psychiatry, and general practice. It will hold its first meeting as early as possible in 2020. (presumably including M Farouz)

  12. (Thx Carla)
    The disgraced Cochrane centre has published a review which is seriously well worth reading . Copyright laws prevent me copy and pasting but the whole review can be accessed online
    Cochrane Database of Systematic Reviews
    Oral isotretinoin for acne
    Information
    DOI:
    https://doi.org/10.1002/14651858.CD009435.pub2
    Copy DOI

    Database:
    Cochrane Database of Systematic Reviews
    Version published:
    24 November 2018see what’s new
    Type:
    Intervention
    Stage:
    Review
    Cochrane Editorial Group:
    Cochrane Skin Group
    Copyright:
    Copyright © 2019 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.

  13. Well, thank you so much Susanne for your writing to all these various bodies for clarification and maybe even action. All the bereaved parents, and the suffering patients, will be very grateful for any action taken like this by anyone. I’m assuming you are a clinician or academic, so maybe will get better responses ultimately than we have.

    Not wanting to sound negative, but we have a lever arch file 6” thick full of letters and communications with most of the various ‘official bodies’ connected with this drug, and we have some very active, so far thankfully not bereaved, parents doing all they can. The baton is continually passed to a new cohort, who cover the same ground, just as parents have been doing since 1982. It’s quite depressing to see how we’ve all been sent round and round this mulberry bush, and to take note of the hours and hours of time, never mind the frustration which hasn’t done our health much good, that has been expended on this. Also, make no mistake, we personally are a small but irritating thorn in the side of the manufacturers and it would no doubt suit them if we, and our little website supporting the sufferers, were to be discredited or removed in some way. Police and others in security have been alerted to take action if anything happens to us. This may seem ridiculous, but it is not. Be very aware, this acne drug is a £multi-billion earning product. If compensation were ever awarded for the deaths and destroyed lives, it could be massively destructive to the manufacturers and the regulators and heaven knows who else.

    Our own personal feeling now is that we’ve lobbied and pleaded and reasoned as best we can. We want just to help the ones, like our son, like Stefan Lay describes so graphically, in his video. There are thousands and thousands of them, feeling the same, who ARE NOT BELIEVED. There are thousands of families whose normal lives have been turned upside down by the effects of this drug on their loved ones and there is nowhere for them to turn for help. If their loved ones, or they, on behalf of same, go to the GP reporting frightening changes in mental behaviour, the acne sufferer will be offered SSRIs. These cause a mini psychosis. The sufferer is then classed as mentally ill. More and more drugs will follow. You can see the excellent work done by Dr Annette Fea (NZ psychologist) which we set out in full in one the RxISKblog posts ‘RoAccutane and the Perfect Circle’ and ‘Roche and The Perfect Circle’, I think it’s the latter, towards the end. In January 2017.

    The suffering of those affected is exactly as Stefan Lay describes. As a family, we lost almost everything due to this drug. Our wonderful son, (and excuse the praising of him, but he truly was a joy) died after 11 years of utter hell. The hell extended to us. Where Stefan describes ‘not being believed’ this is the most terrifying part of it all. We were rubbished as Olly was not believed. Our whole family was torn apart. Our other son had cancer at the same time; Olly, feeling suicidal, was branded as attention-seeking and we as stupid to be taking him seriously when other ‘far more serious stuff’ was going on. But we knew him. The person he had changed into was not him. He’d been changed into a terrified, weakened, vulnerable being whose resilience was depleted, but he fought to stay alive and regain his former self. He built a good business, he could see that people like him needed to get together and support each other in their anxiety, because there was nothing else out there for them. So he started building an Arts and Creativity Centre at his home, but he was given Olanzapine and Sertraline in mid-2012 and he found that he couldn’t remember who or where he was sometimes, he had voids in his thinking and terrible physical head pain. He begged to have a scan and offered to pay for it. He was told ‘it’s just your anxiety Olly, you have to address it’. He realised that no one had any real grasp of what was going on. I’m sure, like other readers of this blog, you can imagine how as parents, we were running around in confused desperation, trying to save him. We were away trying to get him an appointment with a forensic psychiatrist to get a second opinion, but when we returned, he was dead. He knew, from our anxious faces, he was killing us. His farewell letter said he wanted to give us our lives back. He loved us to bits, but ‘there were no answers for his problem. It was all his fault’.

    We want to go on with his work. We’ve formed a charity, The Olly Roberts Charitable Trust CIO 1186149 https://www.justgiving.com/olly-roberts, and we are fundraising to finish his Arts Centre – you can see it on Facebook Olly’s Friendship Foundation. It will be a place where people can come to be understood, distracted by enjoying learning Arts and crafts skills, learn ways of giving their body nutrition, stress management, that may help any possible healing process. It’s main function will be to offer hope. Our little buzzword is ‘Learning through Creativity to find Hope’. Ostensibly it is for anyone feeling anxious, but my own hope is that we can uplift those who suffer after taking this medication, or indeed any medication that has made them feel lost and not listened to. We’ve had a Helpline since 2014. Like Olly used to say, only someone who has suffered, can truly understand, despite having the best intentions, what this is really like. And those sufferers have tried so hard to find ways of staying alive. Together they may come up with something. At least they will know they are not alone. Like we do now, with so much support from all you amazing folk and Dr Healy with this blog forum. Bless you all.

  14. Thanks Heather but no I am not a clinician or academic I am an activist of about 40years in one way or another including health issues – but I do do masses of research..I am not naive, Believe me i know what it’s like to get my head banged against a wall – I also have files a foot thick. I will not give up – sometimes a chink is revealed and progress can be made. Sometimes we can just find the right person in an organisation, whatever, who can help -Sometime we might just be lucky and or have a different perspective or way of doing things.But also there are those who come after us who may be at the beginnings of activism so hopefully what is published on line will be useful to at least some even if only at first to encourage someone to speak out for the first time.And take action if and when they can. We all are doing what we can and I do wish you every success with your venture inspired by Olly. That such gross disgusting things can happen (and they have happened to me too) in a so called health service is what keeps me going when it would be tempting to give up at times. Your resilience is inspiring and I am sure all who end up at Olly’s Arts Centre will be glad to find a kind compassionate place to spend time with you all.
    All very best wishes

  15. HomepageFor the PublicPatient Information Leaflet
    This is the latest leaflet produced by BAD. They state it isto be reviewed in 2020. In correspondence no mention of this although I made reference to thebmj article. Still following it up as I think NICE stated a review was to take place 2022
    Ping pong…..
    ACNE
    What are the aims of this leaflet?

    This leaflet has been written to help you understand more about acne. It tells you what it is, what causes it, what can be done about it and where you can find out more about it.

    What is acne?

    Acne is a very common skin condition characterised by comedones (blackheads and whiteheads) and pus-filled spots (pustules). It usually starts at puberty and varies in severity from a few spots on the face, neck, back and chest, which most adolescents will have at some time, to a more significant problem that may cause scarring and impact on self-confidence. For the majority it tends to resolve by the late teens or early twenties, but it can persist for longer in some people.

    Acne can develop for the first time in people in their late twenties or even the thirties. It occasionally occurs in young children as blackheads and/or pustules on the cheeks or nose.

    What causes acne?

    The sebaceous (oil-producing) glands of people who get acne are particularly sensitive to normal blood levels of certain hormones, which are present in both men and women. These cause the glands to produce an excess of oil. At the same time, the dead skin cells lining the pores are not shed properly and clog up the follicles. These two effects result in a build up of oil, producing blackheads (where a darkened plug of oil and dead skin is visible) and whiteheads.

    The acne bacterium (known as Propionibacterium acnes) lives on everyone’s skin, usually causing no problems, but in those prone to acne, the build-up of oil creates an ideal environment in which these bacteria can multiply. This triggers inflammation and the formation of red or pus-filled spots.

    Some acne can be caused by medication given for other conditions or by certain contraceptive injections or pills. Some tablets taken by body-builders contain hormones that trigger acne and other problems.

    Acne can be associated with hormonal changes. If you develop unusual hair growth or hair loss, irregular periods or other changes to your body, then mention this to your doctor in case it is relevant.

    Is acne hereditary?

    Acne can run in families, but most cases are sporadic and occur for unknown reasons.

    What does acne look like and what does it feel like?

    The typical appearance of acne is a mixture of the following: oily skin, blackheads and whiteheads, red spots, yellow pus-filled pimples, and scars. Occasionally, large tender spots or cysts may develop that can eventually burst and discharge their contents or may heal up without bursting.

    The affected skin may feel hot, painful and be tender to touch.

    Not all spots are acne, so if there is something unusual about the rash it may be advisable to consult your doctor.

    How is acne diagnosed?

    Acne is easily recognised by the appearance of the spots and by their distribution on the face, neck, chest or back. However, there are several varieties of acne and your doctor will be able to tell you which type you have after examining your skin. The most common type is ‘acne vulgaris’.

    Can acne be cured?

    At present there is no ‘cure’ for acne, although the available treatments can be very effective in preventing the formation of new spots and scarring.

    How can acne be treated?

    If you have acne but have had no success with over-the-counter products then it is probably time for you to visit your doctor. In general, most treatments take two to four months to produce their maximum effect.

    Acne treatments fall into the following categories:

    Topical treatments, i.e. those that are applied directly to the skin
    Oral antibiotics, i.e. tablets taken by mouth
    Oral contraceptive pills
    Isotretinoin capsules
    Other treatments
    Topical treatments

    These are usually the first choice for those with mild to moderate acne. There are a variety of active anti-acne agents, such as benzoyl peroxide, antibiotics (e.g. erythromycin, tetracycline and clindamycin), retinoids (e.g. tretinoin, isotretinoin and adapalene), azelaic acid and nicotinamide. They should be applied to the entire affected area of the skin (e.g. all of the face) and not just to individual spots, usually every night or twice daily depending on the treatment. Some topical treatments can be irritating to the skin, so it may be advised that the treatment is initially used on a small area of affected skin for a few applications before being applied to the entire affected area. It may then be recommended to gradually increase the use of the treatment, for example using it once or twice weekly, gradually building to regular daily use. Consult your doctor if the treatment causes irritation of the skin.

    Oral antibiotic treatment

    Your doctor may recommend a course of antibiotic tablets, usually erythromycin or a type of tetracycline, which is sometimes taken in combination with a suitable topical treatment.

    Antibiotics need to be taken for at least two months, and are usually continued until there is no further improvement, for at least six months. Some should not be taken at the same time as food, so read the instructions carefully.

    Oral contraceptive treatments

    Some types of oral contraceptive pills help females who have acne. The most effective contain a hormone blocker (for example, cyproterone) which reduces the amount of oil the skin produces. It usually takes at least three to four months for the benefits to show. Although they may not be taken for this reason, the pills also help to prevent conception. As they prevent ovulation, they may be less suitable in young teenage girls where ovulation is not well established. These tablets increase the risk of blood clots which can be dangerous. This is a greater risk for people who smoke, are overweight or have others in the family who have had blood clots.

    Isotretinoin

    This is a powerful and highly effective treatment for acne which continues to benefit most patients for up to two years after a course of treatment. However, it has the potential to cause a number of serious side effects and can be prescribed only under the supervision of a consultant dermatologist. Isotretinoin can harm an unborn child. The government medicine safety agency (MHRA) has strict rules for doctors prescribing this medicine. Women enrol in a pregnancy prevention programme and need to have a negative pregnancy test prior to starting treatment. Pregnancy tests will be repeated every month during treatment and five weeks after completing the course of treatment. Effective contraception must be used for at least four weeks before treatment, whilst on treatment, and for at least four weeks afterwards.

    There are concerns that isotretinoin may cause depression and suicidal feelings. Acne itself often makes people feel depressed so this can be complicated. Details about any personal and family history of depression or other mental illness should be discussed with your own doctor and dermatologist prior to considering treatment with isotretinoin.

    Most courses of isotretinoin last for four months during which time the skin usually becomes dry, particularly around the lips. Regular application of a lip moisturiser is usually helpful. Often, acne becomes a little worse for a few weeks before improvement occurs. The improvement is progressive throughout the course of treatment, so do not be disappointed if progress seems slow.

    It should be emphasised that many thousands of people have benefited from treatment with isotretinoin without serious side effects.

    Further information on isotretinoin can be found on the BAD website.

    Other treatments

    There are many forms of light and laser therapy for inflammatory acne but these forms of treatment have given mixed results when studied and are usually ineffective in the treatment of severe inflammatory acne. Laser resurfacing of facial skin to reduce post-acne scarring is an established technique requiring the skills of an experienced laser surgeon. Laser treatment should not be done for at least one year after completing a course of isotretinoin. Skin camouflage can be useful for disguising changes in the pigmentation of the skin which can sometimes remain after acne has been treated.

    Self care (What can I do?)

    Try not to pick or squeeze your spots as this usually aggravates them and may cause scarring.
    However your acne affects you, it is important to take action to control it as soon as it appears. This helps to avoid permanent scarring and reduces embarrassment. If your acne is mild it is worth trying over-the-counter preparations in the first instance. Your pharmacist will advise you.
    Expect to use your treatments for at least two months before you see much improvement. Make sure that you understand how to use them correctly so you get the maximum benefit.
    Some topical treatments may dry or irritate the skin when you start using them. If your face goes red and is irritated by a lotion or cream, stop treatment for a few days and try using the treatment less often and then building up gradually.
    Make-up may help your confidence. Use products that are oil-free or water-based. Choose products that are labelled as being ‘non-comedogenic’ (should not cause blackheads or whiteheads) or non-acnegenic (should not cause acne).
    Cleanse your skin and remove make-up with a mild soap or a gentle cleanser and water, or an oil-free soap substitute. Scrubbing too hard can irritate the skin and make your acne worse. Remember blackheads are not due to poor washing.
    There is little evidence that any foods cause acne, such as chocolate and “fast foods”; however, your health will benefit overall from a balanced diet including fresh fruit and vegetables.
    Where can I get more information?

    Web links to detailed leaflets:

    http://www.acnesupport.org.uk/

    The Acne Academy is a UK charity set up by healthcare professionals to help people with acne and contains links to many information sheets.

    Tel: 01707 226 023
    Web: http://www.acneacademy.org
    http://www.dermnetnz.org/acne/index.html
    http://www.skincarephysicians.com/acnenet

    For details of source materials used please contact the Clinical Standards Unit (clinicalstandards@bad.org.uk).

    This leaflet aims to provide accurate information about the subject and is a consensus of the views held by representatives of the British Association of Dermatologists: individual patient circumstances may differ, which might alter both the advice and course of therapy given to you by your doctor.

    This leaflet has been assessed for readability by the British Association of Dermatologists’ Patient Information Lay Review Panel

    BRITISH ASSOCIATION OF DERMATOLOGISTS
    PATIENT INFORMATION LEAFLET
    PRODUCED MAY 2007
    UPDATED JULY 2010, AUGUST 2013, JANUARY 2017
    REVIEW DATE JANUARY 2020

    ACNE – PRINTABLE VERSION

  16. So let’s keep our fingers crossed….letter just received

    M. Firouz Mohd Mustapa
    5:02 PM (14 minutes ago)
    to me,

    Dear Susanne,
    Thank you – that is not a guideline, but a patient information leaflet (hence my confusion). The updating of our leaflets is down to my committee members of consultant dermatologists and it would be up to them to consider what needs to eb updated, but I can certainly forward the BMJ article you had kindly provided.

    NICE is developing their own guidelines for managing acne, likely to be published in early 2021, and we will likely update our patient information leaflet again as a result of that publication.

    Many thanks again for your communication.
    With best wishes,
    Firouz
    Dr M. Firouz MOHD MUSTAPA

    Clinical Standards Manager
    British Association of Dermatologists
    020 7391 6359
    firouz@bad.org.

    From: Susanne Stevens
    Sent: 09 January 2020 16:56
    To: M. Firouz Mohd Mustapa
    Subject: Isotretinoin (Leaflet enc

    Firouz

    You were asking what guidelines I was referring to – BAD leaflett describes a review in 2020 January Will this take into account the article we discussed in thebmj? I believe the NICE guidelines mentioned the next update in 2022.

    Thank you very much
    regards
    Susanne

    3. Patient Information Leaflets (PILs)

    4. Acne

  17. Thanks Susanne for your tireless research and your very welcome endorsemen5 of Olly’s project.
    In the BAD Listed causes of acne, diet is never mentioned.
    The young people at the forefront of their own research, like Stefan Lay and his contact Tom, are looking at the role the liver and gallbladder play. Also the ‘leaky gut ‘ syndrome. We found that using the gastrointestinal support system UltraClear Sustain made by Nutri, made an enormous difference to Olly’s and my own acne. As did the Stone Age diet. We keep hearing how the gut affects the mind. Why should it affect the skin. And if the liver is struggling, isn’t it likely that it can’t get rid of the isotretinoin, which may then penetrate/destroy the gut lining and allow impurities into the bloodstream and out into the skin.
    Blue light and laser is safe and effective – more studies are needed, according to one of Susanne’s references. Olly found it fantastic. The problem for him though was that having spent thousands on it and being delighted with his appearance, all his hard work and time and investment was undone a year or so later because he was given Olanzapine and Sertraline to take down his ‘anxiety’ (due to lingering side effects in the brain from earlier courses of RoAccutand isotretinoin) and the Olanzapine triggered the acne badly all over again. Sertraline added to his suicidal ideation. No wonder his hope went down the drain.

    One issue never mentioned in relation to the drug, but which sufferers can get labelled with, is BDM, or body dysmorphic disorder. Olly was at one time led to believe that his ‘anxiety’ was due to this. Interesting point. Body dysmorphia is a condition where someone is obsessed about a body part they feel unhappy with. So if you express discontent with your disfiguring acne, does that make you a BDM case? Surely not, but it’s a lucrative counselling rabbit hole down which to lure you.

    The whole acne question is a mine field. A lottery. A very scientifically unexplored area. We wonder why young people are feeling miserable and flocking to GPs for help with their so called ‘mental illness’. Isn’t it likely that acne could be a major cause? Isn’t it time we invested in proper research, genuine investigation, maybe encourage the young folk to do it themselves, unhindered by Pharma. We need a U.K.-wide campaign. I keep telling MPs this.

    Let’s look at the gut and the liver like the bright young sufferers are doing. Let’s ask the BAD why they do not give this any credence.

    • Well here’s the ping pong from NICE. Just waiting from GOSH now – will post if and when – in the meantime while they dilly dally yet more parents will be reading and trusting their leaflet – very sad

      NICE enq ref EH-304088-Y5M8J9: Isotretinoin

      National Institute for Health and Care Excellence (NICE)
      2:30 PM (3 hours ago)
      to me

      Dear Susanne
      Thank you for contacting NICE about the development of our guideline on the management of acne vulgaris.

      I should first clarify that NICE does not have a role in monitoring the safety of drugs, this includes banning or recalling drugs. The Medicines and Healthcare Products Regulatory Agency (MHRA) is the organisation in the UK responsible for the licensing and safety of medicines, and for issuing safety warnings, alerts and recalls.

      To be clear our project is not a review of an existing guideline, it is a new guideline topic, so NICE does not have any current recommendations on the prescription of isotretinoin as a treatment for acne. Topics for our clinical guidelines programme are referred by NHS England. The process that we follow has been developed over 20 years in collaboration with our stakeholders. The methods that we use are consistent for all our topics, they are transparent, robust and provide opportunities for interested organisations to get involved. Our aim is to produce high quality guidance and to do this well inevitably takes time. Our guideline is currently due to publish on 13 January 2021 (as per the information on our website), you refer to a guideline publishing in 2022, I am not sure which guidance this refers to and wondered if it could relate to the work currently being undertaken by the MHRA expert working group? If so then you will need to contact the MHRA directly to enquire about their timescales as it is a separate organisation to NICE.

      If the use of specific medicines falls within the scope of our clinical guidelines we will take account of advice and information (including safety alerts) of the MHRA. We will not conduct a separate review on the safety of drugs as this is not our role.
      In the meantime you can keep up to date with the development of our guideline via the link above.
      Kind regards

      Janet (Communications Executive)

      National Institute for Health and Care Excellence
      Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom
      Tel: 0300 323 0141 | Fax: 0300 323 0149

      Web: http://nice.org.uk

      ——————- Original Message ——————-
      From: Susanne
      Received: Mon Jan 06 2020 14:03:27 GMT+0000 (Greenwich Mean Time)
      To: NICE mail;
      Subject: Isotretinoin

      II am concerned that the next reviews of guidelines have been stated as programmed for 2022. In the light of this latest publication in thebmj – can you let me know idf this will be updated more urgently. Parents are of course as well as others, very worried that it is still being prescribed.
      Susanne –
      Thank you If you can reply asap I would be grateful
      Isotretinoin: experts convene to investigate new concerns over suicide risk re-
      BMJ 2019; 367 doi: https://doi.org/10.1136/bmj.l7085 (Published 31 Decembe
      An expert group has been reconvened to review recent safety data relating to the acne drug isotretinoin (marketed as Roaccutane) and evaluate the risk of sexual and psychiatric adverse effects, including suicide.

      The Medicines and Healthcare Products Regulatory Agency’s isotretinoin expert working group had looked at the risk of psychiatric adverse reactions suspected to be associated with isotretinoin in 2014, but it has now reformed to look at more recently reported adverse reactions. In 2019 12 deaths were recorded among people to whom isotretinoin had been prescribed, 10 by suicide, (More above)

  18. Hi Heather,
    Thank you for giving us Stefan’s video of his experience of taking RoAccutane.
    He is very courageous, indeed!
    The young ones are definitely doing things differently than myself.
    They put themselves out there and say it as it is!
    I understand his frustrations and grief, all too well!
    I feel for him!
    Good on him for educating the populace about the truth regarding these horrible drugs!
    He was told that serious side effects occur to 1: 100,000 people!
    This is so untrue! They downplay information.
    Of course, many are going to take a chance if people hear that not many people are harmed by this drug!
    Illegal marketing of drugs, hiding data on harms and misrepresenting research results, is unethical, to say the least!
    Research misconduct ~ Are there any laws that covers this unethical behaviour?
    These big pharma industries are so out of control and all the information that is biased is leaving doctors to make poor clinical decisions on biased information = poor outcomes for patients.
    There needs to be transparency in the health system.
    Removal of commercial conflicts.
    There needs to be an honest discussion between patients and clinicians regarding serious side effects.
    If the LAWS do not CHANGE (mandate researchers to be honest about negative clinical data trials), how can clinicians be HONEST about the serious side effects pertaining to drugs?
    To have clear skin, many are putting themselves through so many unnecessary RXISKS. I do not understand the logic of this?
    Misinformed information = damaging people’s health.
    As far as I am concerned, a professional is revered when they talk about the concerns we are highlighting.
    When a person (like Stefan or myself), who has experienced gross injustice from a drug that harms us, our credibility is questioned?

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