Post-Retinoid Sexual Dysfunction (PRSD) Petition

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October 29, 2018 | 14 Comments

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  1. The horror of this is that the mostly young people who are prescribed this drug for their skin problems (acne or psoriasis) do not associate it with sexual dysfunction. There are no explicit warnings on the packet, despite a group of bereaved parents begging the MHRA at a meeting with our MPs, and chaired by Norman Lamb and Earl Howe, in Parliament to put the information in red on the outside. People don’t read things written in red, said the complacent but irritated MHRA representative, nor do they notice important things written in hyroglyphics

    We are sure that of several of our youngsters ended their lives after taking these meds, because they feared, in isolation, that maybe they had lost their manhood and it is a terrifying realisation. They ended their lives possibly partly due to this, partly due to akathisia and other side effects. They were never warned about this when they were prescribed the drug by their dermatologist.

    • Further to your call, over on David’s blog, regarding All Souls’ Day on Nov. 2nd., may I suggest that we repeat last year’s vigil and send photos and comments to Rxisk’s Facebook page ( if acceptable) since we all seem to be busy at the moment. A ‘repeat’ is always better than a ‘no show’ in my book!

      • HALLOWEE’N

        HAVE YOU CHECKED THE CHILDREN?

        by

        Kristina Kaiser Gehrki

        https://fiddaman.blogspot.com/2018/10/when-stranger-calls-part-one.html#.W9nnZfZ2szM

        Kristina Kaiser Gehrki is a public health and safety advocate. She holds degrees in strategic communication, journalism and education, but feels our most important knowledge stems from personal experience. Her teenage daughter, Natalie, died a prescription-drug induced death after suffering SSRI adverse drug effects that were undiagnosed by her doctor and improperly treated with SSRI dose increases.

        • What a gripping, frightening and tragic Part 1 of Kristina’s findings this is. As she says, the UK are fast falling into the same trap and that is exactly where I felt we were heading when it was first announced that mental health watchdogs were to be introduced into our schools. Once more, there will be money for the ‘top layer’ who will be involved in working with pupils referred by schools. Who will be deciding who needs a referral though? The poor classroom teachers and additional needs coordinators ( on normal teacher’s pay, with, probably, a class of their own to cater for plus overall responsibility for ‘additional’ needs for the whole school).
          How will they be compensated for this extra burden when every school is being squeezed to within an inch of survival due to lack of funding coupled with rising costs? They won’t be – this will just be an extra box to tick and, probably, another target to reach! Children need TIME to BE CHILDREN – to be listened to, to follow by good example, to enjoy finding things out and learning from mistakes. In the main, most of this has already disappeared and pupils are seen as ‘members of an excellent centre of learning’ simply by their achieved grades ………… but what of those who fail to make the grade? – well, how handy, stick them on the ‘in danger of MH problems’ list and that’s the problem solved. Oh how blind we have become to the individual ‘potential’ of each and every youngster that it is our duty to nurture!

    • Thoughts? Heather?​

      ‘it is the closest thing to a cure and the benefit is usually startling and gratifying’.

      Letters page
      Daily Mail
      Good Health

      Ask the GP
      Dr Martin Scurr

      https://www.dailymail.co.uk/health/article-6330719/ASK-GP-lost-three-stone-without-trying-just-getting-older.html

      Q.

      My grandson was diagnosed with acne at ten, and prescribed Zineryt lotion and soap, which, until recently, kept breakouts at bay.
      He’s now approaching 12 and the spots are becoming more frequent and quite distressing and embarrassing for him. I understand acne is a sign of the hormonal changes of puberty, but he has otherwise not a sign of it on his body. I worry he will be afflicted emotionally like his father, who had it for seven years.
      Sheila Harding, Anglesey.

      A.

      The psychological effects of acne can be damaging and long-lasting. Acne affects more than 80 per cent of those aged 12 to 15, often persisting into adult life.

      It is an inflammatory condition involving a number of factors, including increased sebum (skin oil) production, an increase of keratin (fibrous) cells in the pores and the bacterium called Cutibacterium acnes.

      This results in spots which typically affect the face, back, chest and shoulders. The Zineryt your grandson uses is a solution containing the antibiotic erythromycin, and so far has been effective by reducing the levels of bacteria.

      However, the bacteria inevitably become resistant, which is why antibiotics (such as Zineryt) are usually used in combination with other agents (e.g. benzoyl peroxide, available without prescription in a lotion or cleanser) in order to limit the emergence of resistance.

      Antibiotics also work well with topical retinoids, which, derived from vitamin A, act by removing the excess skin cells that tend to clog the pores. They are available as creams, lotions, or gels.
      It may be that the time has come for a more aggressive approach.

      Possibly a change to an oral antibiotic of a different type might be of value — and I would suggest this is combined with benzoyl peroxide or a retinoid product — limiting the use to six months in view of the possibility of bacterial resistance occurring.

      In clinical studies, the benefit of such a combination was that overall spot counts declined by 60 per cent after three months.
      The antibiotics most commonly used as an oral treatment for acne are the tetracyclines (such as tetracycline, doxycycline, minocycline) — a different class to the active ingredient in your grandson’s Zineryt.

      With more severe acne — where you have pustules (spots with pus) and nodules (lumpy tissue) — oral retinoids may be considered: isotretinoin (perhaps better known by the brand name Roaccutane) can be prescribed only by consultant dermatologists and will be used only in those who don’t respond to other therapies, such as oral antibiotics.

      There is the potential for troublesome side-effects, including extreme dryness of the skin, cracking of the lips and eye redness, all of which are transient and settle once the drug is stopped, after the acne has abated.

      The drug can also alter blood cholesterol levels and liver function, so patients must undergo routine blood testing.

      Another concern is a possible link with depression: careful counselling and monitoring of patients is therefore essential — which is why only experts can prescribe it.

      This type of treatment was not available when your grandson’s father had persistent acne, and it may be appropriate for your grandson: it is the closest thing to a cure and the benefit is usually startling and gratifying.

      This is therefore something to be discussed with his GP, as specialist referral is necessary.

      • Annie, I went to school with Martin Scurr’s sister, she is someone, also a doctor, for whom I have great respect. I remember her little brother Martin when we played together at her home as children. I don’t want to be critical here but, yes, RoAccutane is startling in many ways. Martin’s response is careful, conscientious and measured. I would expect nothing less from him. There’s a lot here he doesn’t say, but probably knows. That the cure may appear startling and fast, but only for the lucky ones epigenetically suited to tolerate it does the cure last. We have many examples in our group of bereaved parents, of their young initially responding well, but then relapsing to much worse acne, (as my son did) needing more courses, leading to more neurological risk, leading to suicides. Martin seems to me to be playing safe, as most media doctors must (so they or their paper don’t get sued) and he’s taking the optimistic view. Acne is a horrible thing to suffer, he’s right there. But until we get RoAccutane taken off the market, no one will do any serious work on finding a REAL cure for it, which is safe. And if there’s even one out there now, it has no chance of being well marketed because Roche have so much power than no one can usurp it. No one will listen when careful thoughtful doctors like Martin promote it, albeit as a last resort.

        And also, let’s not forget, RoAccutane is relatively cheap and for many a quick fix. So, with long waiting lists for dermatologists, a prescription for this will get the youngster off their books, back to liver monitoring by the GP, and if the awful mental side effects occur, which for so many they do, then the GP ships them off to the psychiatrist, they are classed as psychotic, and their future fate is sealed. Off into what we’ve termed The Perfect Circle on RxISK. Counselling can’t help. If the mental and physical damage is done, sometimes irreversibly ( including lack of sexual function) there’s not much comfort in talking about it. All the young person will want to do, whether free of acne or not, is to get their brain working right again and their libido back. And sometimes they never can. It’s a lottery. This drug sucks all the joy out of people’s lives, they lose the ability to feel,happiness or excitement. There are other ways to improve the state of ones skin and balance the hormones, the latter will normally balance out with time anyway.

        So, Martin’s response is a classic one. Soothing but with a gentle air of caution. No wonder young people feel reassured and trusting. We all did. And so many of us now are furiously angry with ourselves that we didn’t look beyond the complacency; if we had, we might still have our offspring alive and kicking.

        • Unless you’ve already done so, Heather, I feel that maybe you should contact Dr Martin Scurr with information from your group of parents – information which may well make him think twice about how he paints the ‘benefits’ of RoAccutane. You have been very fair in your appraisal of his reply above but I must say that when I read it, I felt that the message was simply “Use with care”. However, from reading your previous accounts I feel that ‘use with care’ may well be leaving things too open to individual judgement and can often be too late to save a youngster’s life.
          When we gave out your books in exchange for donations to Rxisk Prize Campaign at our mums and tots group, one of the helpers was horrified when told about RoAccutane – and is fairly sure that her grandson was put on it. “But it’s cleared up now so he’s off it”, she explained. Two weeks ago she spoke to me again about her grandson. The acne is returning – and there are concerns about his mental state! She has talked things through with her daughter from our first mention of RoAccutane and has again reminded her of the possible consequences, should this be the drug that her grandson is likely to go back on to again. It’s certainly one that has been given to him by a ‘professional’ rather than his GP – so probably by a dermatologist?
          This particular lady is hoping to bring the subject up during our meeting next week. Whether it’s RoAccutane or not, it seems to be one that can cause real problems of a similar nature. Thanks to your informative comments, Heather, I hope that we may have saved one family from a journey down the all too familiar route to despair.

          • Mary, I have shared all about RoAccutane with Martin’s sister, my old school friend, and indeed my whole class from our grammar school as we have a ‘group email’ way of being in touch. Some respond, others, sad to say, some of the medics in there, ignore it. I could try to get in touch with Martin directly, but maybe better privately through his sister. I don’t mean to be negative but I can guess already at his response, he will be sorry about our tragedy, but will say that it’s very rare. It isn’t, but till Coroners report back all deaths by suicide where people have in the past taken RoAccutane, we won’t get accurate figures. But, think on this—— MHRA admits that on average ONE YOUNG PERSON EACH MONTH DIES BY SUICIDE AFTER TAKING ROACCUTANE AT SOME POINT. (They told us this in a Westminster meeting in front of Norman Lamb and other assembled MPs and Earl Howe).11 in the year at least. And this is their conservative figure. And their representative also told us, without batting an eyelid, that this was very sad but it was collateral for all those who had been prescribed RoAccutane for their acne, and the acne itself could also make them suicidal. So they were saving lives…. so, what can one counter that with? And Government endorse it. I rest my case.

            I am very sorry for your parent. It may be now that the acne will get worse, more courses prescribed, by the third one, major damage will be obvious, and I’m afraid the mental problems may never recede totally, even if he’s stopped already. We watched our cheerful, engaging, utterly delightful son, transformed into a paranoid, anxious, totally different person. Try as we might, I promise you we were completely exhausted with the trying of EVERYTHING before he died, with NO medical support or admission that the RoAccutane had done this, later compounded by Seroxat, Risperidone, Stelazine, escilatropram, Citalopram, and masses of others, the final being Sertraline and Olanzapine. He noted all this, he saw we were on our knees alongside him, trying to understand, trying to help. This is why he felt by dying he would give us peace. How terrible is that. A prescribed drug, endorsed by nice doctors like Martin Scurr, allowed by Government, putting so many young through utter hell. Leaving broken hearted but furious families. Plagued themselves then by stress related poor health, and not allowed to talk about what has happened in the media.

            So, suggest to your parent that adding SSRIs etc can make things worse. Switch to very healthy diet, water at every meal, lay off fats, chocolate, cut down milk, do research, note down what helps. Get her son to take responsibility optmistically for his OWN SKIN. He can do it. Get focussed on it, and give it all he’s got. And his mum needs to tell him that this WILL work, even if it takes time, and it WILL pass. Hopefully he’s caught the scourge of RoAccutane in time.

  2. I agree with the last part. When I reported my SSRI symptoms, I made it very clear that I suffer from SSRI-induced emotional blunting / blocked feelings. What do I find when I look for my case in the database? Feelings abnormal
    They even aren’t able to save the correct symptoms.

  3. A really good example is Paroxetine

    https://info.mhra.gov.uk/drug-analysis-profiles/dap.html?drug=./UK_EXTERNAL/NONCOMBINED/UK_NON_000191079758.zip&agency=MHRA

    Psychiatric Disorders 9509 Fatal 67

    https://rxisk.org/top_100_reactions/Paroxetine/

    top 100 reactions to Paroxetine

    The MHRA and CHM encourage the use of data from the Yellow Card Scheme in research and for publication, but wish to ensure that the limitations of interpretation of the data are made clear.

    I don’t see RxISK having any limitations of interpretation of the data …

  4. Emotional anaesthesia is a big component of PSSD, and can be almost as unpleasant, and for some people it maybe even more unpleasant than the sexual aspect of PSSD.

    Heather says it correctly when she states you can no longer feel happiness or excitement.

    Before PSSD I used to get excited before going on holiday, doing a hobby I enjoyed, or watching a film at the cinema etc. Since developing PSSD I don’t really have an emotional response to much of anything. It sucks the joy and pleasure out of life.

    Living with PSSD is like living in a grey world with the colour drained from it.

    Or like having your TV changed to black and white, where before you could watch TV in full colour, and your enjoyment is greatly lessened because of it, and you are told theres a good chance you can never ever watch TV in full colour again, even though everyone else can; and there is nothing you can do about it, and no one really cares that you are stuck in this greatly diminished existence.

    It feels to me there was a whole spectrum of emotions that were wiped out after i took that first Citalopram tablet, and they have never come back. Occasionally they flicker on for a few seconds in my brain in a weakened intensity to how they used to be, and I remember how I felt before PSSD, just for a brief moment.

    I had even forgotten I had used to feel certain emotions, or that certain emotions even existed, until they flickered back on briefly for a few seconds, and then disappeared again.

    What I wouldn’t give to have my full spectrum of emotions back. Life really did feel so much better before PSSD.

    Life with PSSD is NOT living in the way nature intended. I would argue that it may not be really living at all!

  5. You’ve got it in one Spruce, emotionally, you see the TV in black and white whilst everyone else gets it in colour. If everyone was ill, ‘all in it together’ it would be bad, but not as bad as being locked into this and surrounded by complacent denial from those who DO know but won’t admit.

    Life can be tedious and mundane, but it’s those moments of JOY that uplift us, keep us going, give us hope. When you suck joy away, it’s like encountering the Dementors in Harry Potter, the most scary thing there is. Olly loved those books, he read them avidly, even at Uni. His joyful life was blitzed by RoAccutane in 2001, he worked harder and harder to gain joy again for 11 years, through helping people, working creatively, but the sheer unadulterated joy never returned. And however much we have beaten the drum over the last 6 years since his death, people like Mary’s friend’s grandson and yourself, (with PSSD caused by SSRIs, SNRIs and RoAccutane) on this post, report damage daily.

    And nothing changes. Well, not much. If EVERYONE was suffering this, NO ONE would be, because up with this they would not put. Evil flourishes when the MHRA does effectively nothing, despite soothing weasel words. This is why the RxISK AKATHISIA recent post about causation from 500+ drugs, is SO good. Because it is showing that we ARE all involved, or we are very likely to know someone who is. So we must keep on telling the world, over and over again.

  6. ABOUT PSSD!
    Hello, Dr. Healy! I have elevated progesterone, so you can pay attention to the effects of progesterone, especially since its increase disables libido, I don’t think it is crucial, but still …
    In addition, I think it is necessary to pay attention to oxytocin, it just depends on him everything that disappears when taking SIOZS-feelings, emotions, a sense of orgasm. there is also antidiuretic hormone (vasopressin), which is also responsible for attachments and cravings.

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