After a great deal of work, we are pleased to announce details of two new publications in the International Journal of Risk & Safety in Medicine. The pre-print versions are currently available. [Now updated with printed versions – June 11, 2018.]
The first is our new paper – Enduring sexual dysfunction after treatment with antidepressants, 5α-reductase inhibitors and isotretinoin: 300 cases.
In 2014, we were the first group to publish details in the medical literature about persistent sexual dysfunction after using isotretinoin. Our new paper once again includes this problem. In fact, isotretinoin was the single most commonly reported drug in our study.
The journal would normally charge a fee of $35 USD to access the full paper unless you are a subscriber. In order to make it available to everyone, rather than hidden behind a paywall, it has cost around $1500 USD to buy open access rights. This did not come from the RxISK Prize fund. However, we would be grateful if everyone who reads the paper could consider donating $10 to the RxISK Prize as a gesture of support to those living with enduring sexual side effects.
In addition to the paper, we have also been putting together a petition to the Food and Drug Administration (FDA), requesting changes to SSRI and SNRI product labels to warn about post-SSRI sexual dysfunction (PSSD) and persistent genital arousal disorder (PGAD). The petition sets out in detail the nature of the problem, the history of the conditions, and what needs to be done about it.
As an extra measure we also sent it to the journal, and they accepted it for publication. This means the petition itself becomes a publication in a peer-reviewed journal and adds to the literature on PSSD and PGAD. The journal also very generously agreed to make it open access at no additional cost.
Citizen petition: Sexual side effects of SSRIs and SNRIs is available for download.
We consulted the FDA website for details on what to include, so if the wording looks stilted at some points, this stems from FDA requirements rather than our design.
In addition to FDA, we have also submitted the petition to the European Medicines Agency (EMA) and the Medicines and Healthcare products Regulatory Agency (MHRA), to request changes to European and UK drug labels.
We will be sending details of the new paper and petition to as many groups as possible, but we also need your help to promote them via social media, online forums, or any other networks that you have. You might want to print out copies and give them to your doctor. Another idea might be to print out several copies and mail them to every GP at your local medical practice – or maybe every urologist at your local hospital. If you have links to the media or other groups that might take an interest in these issues, please send them a copy.
We would like to thank the PFS Foundation for giving us the idea for the petition in the first place.
It has been nearly eight months since we launched the RxISK Prize, and we have seen some impressive efforts so far, both in terms of helping to spread the message and also raising funds.
Some people have contacted various medical groups to make them aware of the issues. One volunteer designed and printed a batch of business cards advertising the campaign, which she distributed within the community – on bulletin boards, in hospital waiting areas, in shop windows, etc. Another volunteer spent several days visiting a large number of pharmacies and doctors surgeries, providing them with information from the website. Someone else commissioned a piece of artwork which was auctioned, with all proceeds going to the Prize fund.
Donations have been received from 21 countries. The four videos that we made to support the campaign have received a total of over 6700 views.
Thank you to everyone who has contributed so far. Please keep your donations coming.
Fantastic post- have shared on all social media. Thank you to all involved for the efforts to put this mountain of work together.
Sincere thanks and congratulations to all who have contributed to these two publications.
They are powerful, scientific, superbly written academic papers which must add to the growing patient and professional awareness of SSRI/SNRI/Prescription Drug induced, prolonged, multi-modal sexual dysfunction and its immense related suffering.
Iatrogenic/pharmacological degraded quality of life with social, emotional relationship, economic sequelae, as well as adverse impact on treasured partnerships and families.
A refreshing reassurance that fastidious research and patient/outcomes centred science continues and advances our understanding.
Your blog has provided the perfect antidote to the embarrassing, and evidence
de-based RSM Podcast – 25th April 2018.
We need you to announce this on the joe rogan podcast and vice.com
Thank you very much to the rxisk’s team. The next step should be a Wikipedia’s page about pssd, supported by the numbers of studies and review.
I meet several researchers in my country and some one is looking for build up a study on this issue.
Update of leaflet is absolutely advised. Thank you very much once again.
This is so very important and the kind of material that damaged patients need to take to their physicians in hopes of preventing damage to others. Widespread acknowledgment will have to come before we can hope for effective treatment. Thank you so much for all your efforts.
International Journal of risk and safety in medicine ..
The International Journal of Risk and Safety in Medicine is concerned with rendering the practice of medicine as safe as it can be; that involves promoting the highest possible quality of care, but also examining how those risks which are inevitable can be contained and managed. This is not exclusively a drugs journal.
$10 a Read sounds like a Bargain ..
What a refreshing change from the Hoop-La involved in getting the Study 329 in to the BMJ ..
Editor in Chief
They also uncovered “serious, severe, and suicide related adverse events” that had been overlooked or hidden.
The RIAT re-analysis marks a new chapter in the story of Study 329, showing the remarkable power of open data. But it also shows how much our current systems are failing patients and the public. It should not have taken 14 years to get to this point. It shows that we need regulation, and perhaps legislation, to ensure that the results of all clinical trials are made publicly available and that individual patient data are available for legitimate independent third party scrutiny.
There will be many people around the world who will be very happy to see such a thorough research paper giving credibility to their enduring sexual dysfunction ..
Good idea ..
Thousand thanks dr. Healy! I suggest that readers translate the text of the petition into their own language and spread it on the web and in paper form.
I really hope that the official recognition of pssd is obtained from FDA thanks to Dr. Healy
Sincerest gratitude to David Healy and the rest of the RXISK team for their hard work and outstanding contribution to creating the necessary changes.
Kudos to all the RXISK team.
This is fantastic news : )
It must be a momentous occasion for those who are suffering from PSSD and PGAD, to finally receive some acknowledgement surrounding SSRI’s and the harm they induce.
Without RXISK, there would be no positive changes.
I hope we get the same results down under.
One can only hope.
Have now re-read and studied in detail these two “Rosetta Stone” – peer reviewed publications.
Is there a means that both can be brought to the urgent attention of all politicians addressing the Scottish and Welsh prescription drug petitions?
I think you make a very good point here Tim – both set of politicians ( as well as all others too!) certainly need to be kept up to the moment as far as additional, supporting material is concerned. It’s needed so that we can expect an ‘up to date decision’, when it comes.
Is this PGAD or is it journalists not understanding PGAD or is it nothing to do with PGAD and trivialising ‘context’ ..
‘If you consult the RxISK website you can see more. We have a peer reviewed paper on over 100 cases of PSSD and another one with over 300 cases in press, which can be sent on request.’
Mail on Sunday
06 May 2018 1:59 AM
We’re hooked on a big lie
How can the stupid concept of ‘addiction’ survive, if people such as the Relate organisation can seriously suggest that anyone is ‘addicted’ to sex?
People pursue pleasures at the expense of others, because they enjoy them.
Why do doctors, and the criminal justice system, too, help them to do this?
By Richard Littlejohn for the Daily Mail
Published: 01:12, 4 May 2018 | Updated: 18:22, 4 May 2018
As if the NHS isn’t under enough pressure, it’s now being urged to treat so-called sex addiction.
Charities say there has been a 400 per cent increase over the past decade in the number of people claiming to be addicted to sex.
But who can say what’s addiction and what isn’t? One woman was diagnosed with the ‘disease’ because five times a day wasn’t enough for her.
There are those who would think her frigid. The internet has, of course, made sex freely available. Ephraim Hardcastle disclosed yesterday that the chap tipped to take over the RSPCA is a big fan of the gay dating app, Grindr.
Chris Sherwood even used it on a visit to Uzbekistan. ‘Your nearest hook-up is Vlad, 57km away, over the mountains, behind the goatshed.’
No two people are the same. A woman has just been jailed after stabbing her boyfriend while they were indulging in ‘clown sex’.
I know I lead a sheltered life, but that’s a new one on me. Making love while dressed up as Coco the Clown? How do they manage to keep a straight face?
I’m reminded of the man who was found hanging from a rope in his attic, wearing a deep-sea diver’s outfit. The coroner said it was a sex game that had ‘gone horribly wrong’. I recall speculating at the time that, presumably, it must have gone horribly right at some stage.
Do we really want our A&E departments cluttered up with men in gimp masks and women in clown suits seeking sex addiction treatment?
Excuse me, nurse, I’ve been waiting hours. ‘I’m not a nurse, big boy, I’m a serial sex addict with a medical fetish.
Are you a doctor . . ?
Persistent Genital Arousal Disorder (PGAD) – Professor David Healy
.. the Media, a ‘trivialised’ context…
May 2, 2018 at 6:01 pm
This podcast by the Royal Society of Medicine left me very concerned indeed. I intend to write a critical appraisal of the contents of this podcast and to submit it to the Scottish Parliament (in relation to PE!651: prescribed drug dependence and withdrawal).
Dr Peter J. Gordon
Interesting question, Annie! I think the answer is NO, this is not PGAD or anything like it.
The key thing about PGAD is that it usually has nothing to do with desire, pleasure or being “in the mood.” It’s just a persistent physical sensation that won’t shut up and is uniquely irritating, even painful, making it hard to concentrate or get comfortable in any situation. Most people’s only desire is to make it stop.
As for Peter Hitchens and his Daily Mail friends, I think they are just being knee-jerk conservatives again: “Damned liberals always want to mollycoddle the bad guys instead of punishing them” etc., etc. I don’t know if people can be “addicted” to sex. But I do know they can develop compulsions to pursue sex, gambling, eating, shopping, etc.
Some of these are actually drug-induced (amphetamines, Abilify and dopamine agonists like Mirapex can cause them). They can also develop “naturally” via stresses endured by a person with this tendency, which seems to run in families. In any case it’s not the activity itself that’s so alluring that people get addicted. It can be a very ordinary one like scrubbing floors or checking email. And the stronger the compulsion gets, the less pleasure the person feels.
Hitchens may be right about one thing: You can’t call a behavior an illness if the person has never suffered any real consequences for it! If an ordinary guy loses job after job because despite being warned, he can’t stop looking at porn or pawing women coworkers, OK: maybe he does have a problem that needs treating. But some of these celebrities, CEO’s etc. have been excused and catered to by everyone around them. It’s only right to be suspicious when they claim a “disease” the very first time they are called to account.
Dear Dr Healy, why all those published papers and this specific petition completely ignore the issue of persisting emotional blunting after SSRIs ? Many people have it along sexual disorder. It’s improbable this is a completely separate condition, I would risk to say that’s a variation of PSSD , even a more frequent one. Yet all researchers seems to be not aware of it, or think this symptom stems from depression. I would bet the second, as I was in contact with the Israeli team who took on PSSD and I was EXCLUDED when I have mentioned this. Even RxISK doesn’t mention emotional blunting on it’s pssd section.
I suffer from the both emotional blunting and sexual dysfunction and found the first one as being much more devastating in terms of quality of life. It’s logical because it has impact on EVERYTHING, every possible feeling is blunted, passions and relationships. You can’t even appreciate music, movies, the nature anymore. It has happened so fast so intense, almost like a stroke, just after third pill of the antidepressant, while being on a withdrawal from the another SSRI. I wouldn’t even define this kind of blunting before taking these drugs. So tragic, that people who are willing to critically research the antidepressants are not giving attention to this adverse effect
RxISK does mention emotional blunting and emotional blunting is accepted as happening on ssris and to some extent as persisting after ssris. The reason to focus on PSSD is its a very specific condition. Find the answer to this blunting in this pretty homogeneous group of people and you probably have the answer to emotional blunting also – or a least to a large chunk of it.
Thanks so much for publishing this very important paper!!
I thought the PFS findings on features they have noticed w several possible mechanisms very interesting.
Terrific! Thanks to all the team, including those whose awful experiences form the basis of the paper.
I’m interested in the suggestion that PSSD caused by antidepressants differs to the sexual dysfunction caused by antipsychotics (unless I misread something?). My experience on olanzapine was very similar – numbness, complete lack of libido and all the rest. The only major difference was that post-olanzapine I got a terrible dose of PGAD. I’d be very interested in how tardive movement disorders caused by antipsychotics might be another piece in the puzzle. I never discovered what causes TD – although I haven’t done any serious research for a while. When I was looking a few years back – all I could find were statements that no one knew. Maybe there’s more knowledge now, but somehow I doubt it. No ‘body’ ever seems to have been interested in researching a condition that affects people with serious mental illness/schizophrenia/bipolar diagnoses – and consequent heavy duty APs. Sometimes I worry that all of us who took APs – old and new – for depression as well as the SMIs, get forgotten. I think all this is absolutely wonderful – the Prize and real push to find a cure – but some of us drug wrecks are such a mess, and took so many psychotropics. My guess is that we all started off on ADs then moved on to APs, and lithium, carbamazepine etc.
But I do understand that focussing on one effect of one class of drug simplifies the search.
Whatever, many congratulations to everyone involved and thanks for making the article available.
Have circulated the paper to a few places – it’s such a great piece of research which surely must be acted on now – whatever the resistance people cannot continue to be harmed by covering up the truth . . Nathan’s comment reminded me of the opposite effect to emotional blunting When amitriptiline was prescribed for pain as well as depression it caused, as well as some of the effects listed on web sites now , a state of becoming ‘high’ accompanied by fast quite poetic speech often sounding quite ‘deep’ but was very distressing It was as if the person was developing ‘bi polar disorder’ or taking street drugs.. After stopping the drug these symptoms stopped,( including falls and irregular heart beats which were described as normal and would disappear in a few weeks) The anxiety which was better described as feelings of fear took much longer to wear off . Some of it may have been due to not knowing what was happening and worrying if it would start up again. Thankfully it never did. There will still be so many who continue to suffer because they will not be informed by prescribers, have no access to web sites etc and might not even think of relating ’emotional blunting’ or other symptoms to the medication. What is worrying is the proposal thrown into an interview
by the ex chairs of college of GPs and college of psychiatry – that they are wanting to concentrate on ‘preventative measures’ to treat people before they become ‘really ill’. But didn’t spell them out. Surely they should have been discussed this with members of the colleges at least and then published in one of the journals before that was stated. Have sent a copy of the research paper to the registrar of coll of psychs – they will have it already probably but as a member of the public I feel entitled to know their response.
Have, finally, found time to sit down and properly look through the work discussed in this latest blog post. The contents show a dedication worthy of grateful thanks of the highest order. It is so encouraging to see this different angle to the work of campaigning for recognition and/or cure for the suffering of so many people.
We knew that things would be quietly moving along, just out of our sights – that this dedicated team wouldn’t have left the rest of us to campaign whilst they rested on their laurels. Let’s hope that this work and its acceptance will open the floodgates of donations to the Rxisk prize fund now. We know that our little deeds of support pale into insignificance compared to the massive success of this research but I firmly believe that each little cog has its own special place in the machinery of this campaign – and that we should all share the team’s pride of ‘a job well done’ here. I hope we all continue to support this worthwhile campaign with renewed vigour after reading the results of their hard work. Thanks so much team!
Have left a mention of the Rxisk paper on Duncan Double’s Critical Psychiatry Blog – He flags up yet another research project based on the immune system as cause of depression ‘How does a Cambridge professor of psychiatry get away with it?’ The article reveals how professor Bullmore is compromised by relations with the drugs industry and potential development of new medications based on a theory many are critical of but it seems some are interested in.. The article gives a link to the review of his book ‘The Inflamed Mind’ by Neil MacFarlane independant psychiatrist and blogger which exposes concerns that ‘his aim is to prepare the way for new patented drugs to get through the lax regulatory frameworks which exist in both Europe and United States’.
it’s the “right time for me to take this decision.”
Volume 2012, Article ID 965908, 6 pages
Relabeling the Medications We Call Antidepressants
David Antonuccio1,2 and David Healy3
This paper raises the question about whether the data on the medications we call antidepressants justify the label of antidepressant. The authors argue that a true antidepressant should be clearly superior to placebo, should offer a risk/benefit balance that exceeds that of alternative treatments, should not increase suicidality, should not increase anxiety and agitation, should not interfere with sexual functioning …
6. An Antidepressant Should Not Interfere with Sexual Functioning
Sexual side effects caused by antidepressant medications appear to be a bigger problem than first thought in the original clinical trials. Premarket trials estimated that 2–16% of patients taking SSRIs and SNRIs experienced sexual dysfunction . Montejo et al.  examined outpatients (610 women and 412 men) with previously normal sexual function who were being treated with antidepressants from April 1995 to February 2000. All patients were interviewed with the Psychotropic Sexual Dysfunction Questionnaire. Sexual dysfunction was reported by 62% of the men and 57% of the women. Women reported more severe symptoms. Dysfunctions included decreased libido, delayed orgasm, inability to have an orgasm, or decreased arousal. The SSRIs and venlafaxine resulted in the highest rates of dysfunction. Comparable rates of sexual dysfunction have been found in a more recent study . There is even evidence that some patients may experience genital anesthesia or pleasureless orgasm, a problem that for some patients may persist even after the medication is discontinued .
On all of the identified dimensions for what a medication should accomplish to be called an antidepressant, current medications we call antidepressants seem to fall short. They are not clearly superior to placebo for the vast majority of patients for whom they are prescribed. The risks appear to outweigh the benefits for many patients, risks that are serious enough to warrant black box warnings about increased suicidality for patients under the age of 25 issued by the FDA and other regulatory bodies. There is now worldwide consensus that these medications increase the risk of suicidality. They may even increase the chronicity of depression in some patients. Anxiety, agitation, gastrointestinal problems, and sexual dysfunction are the most common side effects.
Though the data reviewed in this paper appear not to adequately support the label of antidepressant, as long as these medications continue to be called antidepressants, prescribers will feel a moral obligation to offer them to their patients who are suffering from depression.
Of course, the drug industry does not have an incentive to change the label. However, we feel patients ought to be informed of these possible alternative labels because they may apply equally well if not better. The main point is that calling these medications antidepressants is a marketing decision that does not appear to be consistent with the scientific data.
David and team,
The pdf of the first paper (Enduring Sexual Dysfunction) seems to not be formatted properly, as the upper 20 to 25% of each page is cut off when printing. I’ve tried printing from several different downloads of the pdf from a few sources with the same result. Perhaps it is some transient quirk of my set up, but I thought I’d mention it to you in case the issue resides on your end.
The second paper prints normally.
Many kudos for the work you do. I work with a number of clients who suffer sexual dysfunction from these drugs, including as a result of taking SSRIs and SNRIs as a treatment for premature ejaculation – or for any reason associated with performance related anxiety. I have most of your papers and have used quotes (with proper citations of course) from them in the book I am about finished writing on sexual dysfunction / genital conditions and the male pelvic floor.
White Coat Black Art
‘My sex life is gone’ ..
‘research by patients’ .. I wish I’d known ..
Dr. Dee Mangin is one of the few doctors researching what happens when people stop taking antidepressants. Mangin is a family physician and associate professor in the department of family medicine at McMaster University in Hamilton, Ont.
‘After listening to Dr Dee Mangin today, I felt encouraged, someone is listening, just as the Public Petitions Committee members are listening. It makes a huge difference. Please believe that, it really does. Every time I meet silence and denial, avoidance and deflection, accusations (pill-shaming) and scorn, I feel immense pain. And that pain is felt throughout our community. Words matter, they matter a great deal and for those who purport to be experts or policymakers in mental health not to recognise this is utterly shameful.’
A fantastic interview with Dee Mangin, Laura Delano, from Fiona French .. hope ..
Listen to the full episode ..
Hello! I wanted to write about PSSD, the alleged causes and solutions, you say that you need descriptions and symptoms to understand the cause, for example PSSD developed not immediately, but 2 months after the end of fluoxetine intake, but your site is blocked for Russia, and you have to write via VPN, and in addition you do not miss my messages. Apparently, for you other people than Americans are not people and you are not interested in the reports of people from other countries. Very sorry.
Neither you nor Russians are blocked. Your last post contained a number of suggestions that I wanted to check out first but haven’t had time. What is blocked is anyone proposing things that are bright ideas but could be dangerous and have no evidence they are likely to help. People with PSSD and related conditions shouldn’t have to take too many risks.
You suggested microdosing with SSRIs. This seems unlikely to be helpful. You mentioned tweaking 5HT-1 receptors – this has been done to death by lots of people with PSSD, its not the answer
You suggested pyrazidol. This is not available in Europe. Its an old drug of a type that several companies developed in the 1970s but which were never brought to market. It inhibits serotonin reuptake – so seems more likely to cause than cure the problem. You mention some people in Russia say it helps PSSD. If you can give us something convincing about that you might interest people but just vaguely mentioning it is unlikely to persuade many that the people involved either had PSSD or have been helped.
You mentioned maprotilene. A catacholamine reuptake inhibitor has some plausibility but if this were the answer I think it would be obvious by now in that enough people go on these drugs – atomoxetine, reboxetine, desipramine, lofepramine, protriptyline – and would have reported a benefit – unless there is some other action you are thinking about.
Dr. Healey, thanks!
how about mirtazapine? I saw in our forums reviews of people with complete impotence long after SSRIs who wrote that mirtazapine completely restored everything to them, even those who had impotence caused by other causes and who did not take SSRIs. Trazodone seems to be helping, too, but you should drink it carefully. And pyrazidol is an MAO inhibitor, it has another mechanism for increasing serotonin, you have written that PSSDs cause SSRIs and tricyclics, and MAOI is not mentioned, that is, the greatest harm is caused by the binding of serotonin vector carriers, rather than the destruction of MAO. Can protein carriers become smaller after “treatment” of SSRIs?
And yet, the expansion of the pupils, problems with libido, including, this is called “honinolytic side effects.” That is, it can still be in acetylcholine, where everything is connected in the brain, in the blockade of the cholinergic receptors with this shit?
PSSD here means you have genital numbness as a key part of the problem. Serotonin reuptake inhibitors cause this and also cause immediate genital numbing once you take them first. Neither mirtazapine nor trazodone reverse this. They can have other “good” effects on sexual functioning in people who do not have PSSD but do not appear to have any useful effects in PSSD. MAOIs did not appear to intersect with PSSD in any way. They can cause their own problems but not this
Peter Pratt (pharmacy dept Sheffield Health and social care foundation trust) is recently appointed (according to google) NHS Chief Pharmacist after 30 years work as a specialist pharmacist in pychiatry. He thinks that every mental health liason team should have a pharmacist in their team. It sounds a good idea? presumably GPs are part of the team. I don’t know if he includes that service users should have access themselves to the pharmacist. Peter P says he attended a meeting of the PHE on April 30th to discuss prescribed medicines that may cause dependance and withdrawal issues. Whether it is happening or not I am not sure but he has also stated that there needs to be a review of the evidence on the scale and nature of problems with some prescription medications and how they can be prevented and treated. ‘Users’ and carers were involved with the meeting. As ever there needs to be clarity as to who were representing ‘users’ and carers. How useful it will be depends on whose is calling the tune perhaps. Why does the college of psychiatrists though need another pharmacy cttee with a different chair if Peter P is doing this work?
PS Are the Rxisk Papers being included in above review?
No one has approached us
Peter’s a good man. Difficult though to get into a position like that and not be “politically” mature. We asked him for some data recently – readily gettable for him but he hasn’t been forthcoming
So I’ve sent Peter P a copy of your paper and asked if it is being included – he may be less wary of a query from a non professional – will forward if he replies of course. Chair of coll of psychs pharmacology cttee hasn’t replied – will chase up once then give up
Thanks for doing this. Everyone has however an easy cop-out. They can wait to see what FDA does and if FDA does not nothing they can say their hands are tied. But FDA doing nothing is not a good excuse – it did nothing in terms of warning about suicidality for over a decade after the issues were first raised
Well it seems everyone wants to hide behind the excuse of “our hands are tied” and the red tape, and wait to see what other people will do. It’s not good enough! Not even close to good enough!
What can we do to make the FDA take action?
Surely PSSD can’t be ignored forever? Or can it?
Are you confident that eventually PSSD will get the recognition it deserves Dr Healy?
PSSD is a genuine form of hell on earth. A real horror. I can promise you.
Every single day is a mental struggle for me to keep going with this condition. I have been through some difficult experiences in life, but they all pale in comparison to the PSSD, and all the social problems that come along with living with PSSD.
I feel deeply traumatised by everything that has happened to me, and the uncaring and at times brutal response from the medical profession.
Everyday it hurts. And no one cares. Especially not the people responsible.
Having your ability to enjoy sexual pleasure possibly permanently taken away from you at a young age. Its real everyday suffering and torture, and there is no escape or relief from it.
This is my life and my future as a young man possibly permanently ruined!
How dare they do this to me! It is my sexuality and my body. Not theirs. I never gave my consent for any of this! I hate every moment of it, and have done for the last 10 years!
10 fuc@ing years! Come on now. Enough is enough. When can the torture stop please.
Sometimes I feel I would have rather gone blind or deaf. At least I could have received some empathy and understanding.
PSSD is also like the perfect crime in a lot of ways. There is no visible outward sign, unlike with tardive dyskinesia. It is easy to blame on “other factors”, such as low mood, stress, or your “mental illness” causing the sexual problems. And the embarrassment and stigma of having sexual problems can make talking about it very difficult, which helps keep it under the radar.
Very easy to deny, dismiss, and ignore. Year after year.
We must not rest until it is exposed!
Atypical antipsychotics are antidepressants too. Psychiatrist told me that I was old.
Except for Geodon they have no effects on serotonin reuptake and don’t cause PSSD. They can cause other problems. If you have numb genitals this has nothing to do with aging.
No, I took quetiapine and penfluridol for 10 years. Penfluridol was not sold anymore in my country by the end of 2008. A month later, withdrawal symptoms appeared with many neurological dysfunctions. Then I discovered that quetiapine was not helping me at all to treat schizophrenia. So I started to stop all medication. It took me between 2009 and almost today to fully recover from neurological disorders. I only use today (less is more) amisulpride to stop anxiety. I can live with the voices but not with anxiety. Alcohol is poison, I have found some great sativa or indica cannabis that help me to treat schizophrenia, no side effects. I can not tell if this last treatment is good for any people having schizophrenia as much as every person react differently to alcohol, to cannabis and event to any psychotropic medicine. My psychiatric treatment may not be the good one for you. It is like food too, I need a very special kind of alimentation that may not suit for some other people. The word concerning psychiatric treatment is definitely “less is more”. Also, I never mix chemical products or psychiatric products that can only be made in laboratories. Sexual dysfunction is not forever. You are what you eat. It can take years to recover, also some sports is a good habit to have too. Alcohol is a chemical product too. I can not tell much more than this. Future will tell if I can get a healthy life like it was before 2009. My only job since 2009 is to be at my best. It’s a real job. I choose to consider this job as a game but I do this for me and for my country.
Last word would be that quetiapine cause to me some kind of priapism. at the beginning of treatment, nothing apparent but with years passing, I have to admit today there is accumulation of quetiapine of the body that can cause priapism. Can we say priapism is caused by overdose (quantity and duration) of some antipsychotics ? Can I recover full sexual functions after suffering about what it looks like to be priapism ? What is in fact priapism ? Is it having a penile erection for 3 hours ? How many chance can we have a penile erection for 3 hours and finally tell to ourself “this is proapism” ? So we need to think about the neurological consequences of taking many different drugs at the same time and also about taking these drugs for so many years. Everything looks alright until the day I discovered that sexual dysfunction can mean also having a too good sexual health. Too good is bad and too less is bad too. What does it mean to have a good health ? Good health mean that you need nothing except drinking and eating. Less you take psychiatric drugs, the quickest you can stop to take psychiatric drugs, the better it is. Different kind of psychic disorders but for sure it is to the patient and to the doctor to do a real job to get out the quickest possible of any psychiatric and chemical medicine treatment. More you wait, more it take time to fully “recover”, more you may have some other serious troubles or disorders that may not only be psychic but also social, physical, emotional, spiritual, legal, etc.
i got my pssd from second generation anti psychotic- risperdal at the age of 13. first generation anti psychotic didnt cause me this condition in the 6 month before i tryed the second generation. i suffer for 21 years and i only took risperdal for 3 weeks. i think second generation anti psychotics can cause pssd and i know many other people that got it this way. it destroyed the eroginous sensation in the genitals but kept the tectile sensation so no findings with QST. this way there is no libido what so ever. there is ED and premature ejaculation and compleet unhedonic orgasm. we suffer from emotional blanting too. i dont think neuritis is behind that because i find this to be CNS problem and my SFB was fine. most likely 5HT1A receptors are downregulated\ internalised allong side 5HT2A receptors. i dont think they cause permanent problems to the D2 receptors so the serotonergic factor is very similar for convetional ssri’s induced pssd. flibanserine seems to help in about 25% with my sexual sensations in the genitals and eractions. it strenthen the serotonergic mechanism hypothesis of second generation anti psychotic induced pssd.
I gave hard-copies of these two invaluable publications to my G.P. yesterday.
There was genuine interest, and extra consultation time was willingly given to discuss.
My emphasis that PSSD (et al) has unique features of sexual dysfunction that do not occur in affective disorders was recognised.
Assurance was received that they would indeed be read. I was thanked for bringing them to his attention.
We also covered emotional blunting and the fact that SSRIs cause alterations in feelings, thoughts, emotions and behaviour which are vulnerable to misinterpretation as “emergent mental illness”.
None of this was challenged or denied. There was thoughtful and concerned receptiveness.
Has there ever been an estimate on how common PSSD is likely to be? Or is it thought to be rare overall?
I have heard differing opinions from different people about this recently.
One opinion is that PSSD is likely to be quite common, but that most people, mostly go back to normal in regards to sexual desire/ function, and therefore only are affected by it slightly. Therefore they are less likely to complain about it.
The other opinion is that PSSD is quite rare, and that there are millions of people taking SSRI’s, with only a relatively small amount complaining about PSSD. So therefore the majority taking SSRI’s are unlikely to be affected by PSSD.
I was wondering what Rxisk’s stance is in regards to how common PSSD might actually be?
Let me ask the question the other way around. How many people return to normal after an SSRI? Looks like some do. But no-one knows how many. And it may not be more than 50%.
The severe form of PSSD is relatively uncommon but there may be a lot of people with milder forms. This is an important question primarily because the answer to will affect thinking about what the cause might be. The rarer it is the more likely what has happened is that some people have a gene that codes for this response. If lots of people have it, then its not a case of finding the one gene that would let you know to avoid these drugs.
Do you think it will ever be possible to actually find out how common PSSD is?
Has it been found out how common tardive dyskinesia is, or other adverse drug reactions/ legacy problems.
It would be nice to eventually know roughly what percent of people develop PSSD, but I would imagine as it isn’t officially acknowledged by medicine yet, that doing studies/ research might be difficult.
so why does the numbness of the genitals arise? apparently, it should not be irreversible, it can also occur after the first receptions, but then pass after the end of admission in most people! how drugs are allowed in general, which are unknown how they act ?!
And all this, I’m sure, is one cause-and numbness, and weakening of feelings and emotions, and dilated pupils and others-this is caused in many by “medicines” and passes after cancellation, but for some reason it does not work for everyone!
About the lowering of dopamine, this is very likely, since both dope and emotions depend on dopamine, especially since it arises not only from antidepressants, but also from neuroleptics!
and about two drugs would still like to know your opinion-tianeptine and bupropion, the first lowers serotonin, and the second raises dopamine! that is, they are the most likely drugs that could help!
if the sensitivity of serotonin receptors is lost, how to return it? obviously, lower serotonin? are there any means that block its production?
and yet, it may be a matter of changing the work of the “transport” of serotonin and dopamine, reading something like that when taking atideides, the “transport” of dopamine begins to suffer serotonin or something like this, because MAOI does not cause PSSD …
Thank you for attention!
If you read the almost 30 posts there are on this you;d find most of the answers. The other angle is there are so many forums and smart people who have done more than speculate as you seem to be doing but who have actually tried things sometime at considerable risk to themselves that if there was anything obvious out there that helped we would know about it by now.
If you have solid suggestions based on trying something that has actually helped you or someone you know who really has PSSD or PGAD rather than just sexual dysfunction, we would love to know about it and of course there is a prize for someone who finds an answer. But I personally don’t have time to engage in speculations especially ones that have been covered extensively in other forums. Sorry if this sounds abrupt. The alternative would be to post your comments and let them go unanswered. I suspect not many of those who tune in here would wish to engage in issues extensively hashed out elsewhere. But everyone would be riveted by a new hypothesis that offered real opportunities
Dr. Healy! You are right, I have nothing to do with medicine, I just wanted to voice some assumptions and methods of treatment. About preparations – to me meanwhile for example Valdoksan nothing has given, buspiron too (from buspirona even similar it became worse, as will be further-I do not know), but I drank them not for long, weeks 3 everyone.
Concerning who can have PSSD, about genes, I’ve seen reviews of people who took SSRIs several times and who, after the reception, all recovered, and after the course of reception the next time – there was a PSSD, because these are the same people and their genes are unlikely to change. I had it the same way-the first time I took 4 capsules of fluoxetine in a few days and after that nothing broke, and then I took 2 weeks in a row, and then PSSD started, 2.5 months after cancellation, except for a decrease in libido and sensitivity of genital organs nothing happened, and after 2.5 months after the abolition, suddenly in one day the libido almost completely disappeared, feelings and emotions too, the sexual organ decreased and insomnia began, and all this happened in one day! how to explain this ??? because I did not drink them already, and instead of improving after a time, the deterioration came!
Therefore, it seems to me that this is all much wider than the numbness of the genital organs, some people lose libido, others have numbness, the third libido is normal, but emotions disappear, there may still be problems with sleep. At me for example pupils also have extended and reddened eyes during reception and till now as. at all different and in different degrees, but I think that all this is caused by one cause – a violation of the serotonin system from taking SSRIs.
In addition, I am surprised that even in positive responses about SSRIs people sometimes write that their effect persists after cancellation for months or even years, it is very strange that the effect lasts so long, so it should not be, that is, they obviously cause long-term increase serotonin, only this one is beneficial, and the other to the detriment.
if you will be useful assumptions, you can pay attention to the fact that SSRI histamine and adrenolytics, and it also seems to play a role in the symptoms of PSSD. Cholinesterase inhibitors (?) Can help here
and yet what is the difference between MAOI and SSRIs, because MAOIs also increase serotonin, but for some reason do not cause desensitization of receptors ??! can, if we find a difference in the mechanism of action, it will be easier to understand what exactly is the harm of SSRIs.
If something helps me or if there is important information, I will definitely inform you!
and still forgot to say – sort of side effects on the genital area, including loss of sensitivity are caused by excessive stimulation of 5 HT2 receptors, in particular in the spinal cord, so if serotonin is constantly elevated, then it is not surprising that this happens, I may be mistaken, but it is excusable to me , I’m not a doctor, but on the problem of PSSD, unfortunately, most doctors do not have a horse
That is encouraging Tim – I am wondering if s/he might be willing to give some feedback here after reading though your copies? It would be useful to hear from GPs anonymously or not.
On google 8 hours ago – Depression and Management – Guidance and Guidelines. NICE 2nd Consultation (after criticisms of the first one by ‘experts’) Invites responses by June 12th. from mainly organisations. Individuals are welcome to make comments but they won’t be published on the NICE website! Advised to choose a relevant org. and request they include individual comments in their submission – which from what I read via the links, have been blurred out by submissions from orgs in the first consultation. Their is the little problem of self interests may be at stake. An e mail address is given on the web site for organisations and individuals to contact NICE – ‘any queries – Depression in Adults Update@nice.org.uk. There is a huge number of documents to read through via the links given by NICE. Clare Gerada has already stated in PULSE that the second consultation is good news although at the time she was contacted by Sofia Lind and Isobel Sims for their article in PULSE she had not had chance to study the full revised guidelines, So they are are available on google websites – There is loads of material on the Rxisk blogs ,and Rxisk is an organisation – could NICE be sent the papers with research recently published in the Risks and Safety of Medicines Journal?
Is there any time frame, within which, we could expect an answer from the Regulators ?
Have you thought about sending a copy to the European Ombudsman, Emily O’Reilly ? She’s known for a special interest in the patients rights, She has pressured EMA numerous times at the subject of medical data transparency. Maybe she could “keep an eye” on this petition too ?
Dr. Healey, let me ask you as the main expert on the problem: were there cases of PSSD from such drugs as trazodone, mirtazapine and mianserin if they were taken as the only drug?
I’ve got PSSD from trazodone and I know several other people who also suffer from this after the same antidepressant. It’s probably much less likely to get PSSD from trazodone than SSRIs but no AD is safe.
Regarding how often PSSD occurs, based on viewing and communication in our forums, I came to the conclusion that the problem is rather rare, most people write that after the end of the SSRI, everything returns to normal, but there is no exact statistics. I wonder if every second really has such a terrible problem, why is this topic not known to anyone and this muck is not banned completely and forever ???
I have some thoughts on how to try to fix this, what I’m going to do, but I’m not sure about them and do not have full information, so I wanted to clarify one thing: desensitisation of exactly what 5HT1A receptors presumably develop- presynaptic or postsynaptic?
I’m sorry that I write so much, I do not know how else to contact you, I wanted to add more about the symptoms of PSSD: you described in the article about genital numbness, decreased libido, abnormal erection, loss of emotions, etc., but I do not remember so that it was indicated on such a symptom as a decrease in the size of the genital organ, I had it all in full at the same time in one day, and not only me, there are other people, so you can add such a symptom as a decrease in the sexual organ.
Thank you Dr Healy and the rest of the rxisk team for listening to us and putting forth such an effort to encourage change and recognition of this horrible condition.
Does we have a time fram for the response from th FDA? Although I expect a rejection as they usually do with all citizens petitions.
No fixed date yet, but FDA have been in touch to say they are considering the case in detail
It is still being considered. Not clear when we will hear. But it has passed the outright rejection date.