Delete – Delete!
No sooner was the original Wikipedia PSSD page restored that it attracted an extermination notice from the Wikipedia Daleks. The original page may or may not still be here – Wikipedia PSSD.
In Wikipedia Editor Inserts Foot in Mouth on Monday, we called on people to consider hosting Chinese, Hindi, Japanese, Spanish, Dutch and other Wikipedia pages on PSSD – Post-SSRI Sexual Dysfunction – if one doesn’t exist in your language. Almost immediately we have had an offer from China for a Chinese translation of the PSSD. We have had people report PSSD from thirty countries and there have been log-ons from over 170 countries to the Post-Finasteride Foundation website, so there are likely more people who could help with this effort. It would be fascinating to have the PSSD page in all major languages except English!
One hundred and fifty cases of PSSD
Part of the reason to restore the Wikipedia page is the publication of a peer reviewed paper – One Hundred and Twenty Cases of Enduring Sexual Dysfunction following Treatment drawn from reports to RxISK from people all over the world with PSSD, PFS or PIS. This paper puts the condition on a more solid footing. There are many many conditions featured on Wikipedia with far fewer cases reported and far fewer peer reviewed articles.
As a contribution to the cause, the article is made specially available here by the International Journal of Risk and Safety in Medicine who would normally charge a substantial fee for making it available. It might be helpful for some to download it and bring it to your doctor. It would be helpful for everyone if some of you could distribute it in any networks you have – PSSD forums, through the media and to any other interested parties.
It outlines the features of the syndrome – loss of libido, loss of function, genital anesthesia and more.
What it also shows is that there is a considerable overlap between PSSD and Post-Finasteride Syndrome and Post-Isotretinoin Syndrome. This helps undercut the original Formerly 98 arguments for deletion – this is just a side effect of SSRIs so all that is needed is to include this information under SSRIs and their side effects. It isn’t just an SSRI side effect – other drugs can produce close to identical clinical syndromes.
It shows a problem that can strike any age, and both sexes. That it can start within a few days of being on an antidepressant or perhaps only start when treatment is being stopped. There is a real challenge here to pharmacologists to work out what kind of mechanisms might give rise to a syndrome like this – which in many respects looks like the sexual equivalent of Tardive Dyskinesia.
At the time the article was submitted we had one hundred and twenty cases, from twenty-two countries, we now have closer to one hundred and fifty.
Lareb in English
On March 11th this year, on its front page the Dutch Newspaper Volkskrant published a piece on PSSD, outlining that Lareb, the Dutch patient adverse event reporting agency, now endorsed PSSD as a clinical syndrome. The text of the article in English is here.
Medications to suppress or prevent depression may cause permanent sexual dysfunction. Some patients who stopped taking antidepressants say years later, they still have no libido or are suffering erection and orgasm disorders.
Lareb has concluded that the combination of the complaints we have heard is reason for us to point out that this could occur in practice
Lareb will publish an article in the Journal of Psychiatry drawing attention to this phenomenon soon. In the scientific literature several cases of patients who use antidepressants and suffered from sexual dysfunction have already been described. The patients were relatively young, and there were no other plausible explanations for their loss of libido. It has not yet been shown how exactly the symptoms occur, or on what scale this happens.
The U.S. package insert for Prozac is the only place that says that “symptoms of sexual dysfunction may persist after treatment has stopped.” “The combination of complaints we have heard is reason for us to point out that this could occur in practice,” says Lareb. Until now it was thought that the sexual problems disappeared when patients stopped taking antidepressants.
The problem is with a specific group of antidepressants called SSRIs. The mean age of the patients who contacted Lareb, was 30 years old. Patients, including both men and women, said explicitly that they had started medication just before the problem started. No sexual or relationship problems existed before that. Some said that the depression was over, but that the sexual symptoms persisted.
Lareb received nineteen spontaneous reports. Not many, but enough to see a clear signal. The phenomenon is unknown and there is a lot of shame involved. Documents in the hands of the Volkskrant show that the MHRA, the English equivalent of Lareb, received hundreds of reports of recent years patients who suffered from Post SSRI Sexual Dysfunction (PSSD).
“PSSD is a very serious problem,” said Professor Marcel Waldinger sexual psychopharmacologist at Utrecht University. “Often it does not come to light because people do not talk about their sexual problems as quickly. Psychiatrists and family doctors send patients usually away with the message that the drugs cannot do this. During lectures they react often shocked when I tell them that it is indeed possible.
Waldinger has had a number of these patients in his practice, he says. “I’ve studied them extensively. Their symptoms are most likely caused by SSRIs. All other explanations, such as that caused by the depression or relationship problems, we have excluded ” He suspects that the side effect is rare, though there is no research done on this. The fact that libido can decrease significantly while taking antidepressants has been known. According to some studies, more than half of the patients are affected.
Thus, in the package leaflet of paroxetine describes a change of sexual desire and sexual functioning as “very common”. Medical director Rudolf Olden of the Dutch arm of GlaxoSmithKline, maker of Paxil, says his company has no research that has been done into PSSD and that no plans for it. “But we take seriously each side effect. We know that this is discussed in the literature. It is a familiar concept, “says Van Olden.
Internet forums say thousands worldwide former antidepressant users have PSSD. On a peer support forum is a farewell letter from a man who could have committed suicide because of PSSD in 2010. In the letter he says that the pills have destroyed his libido and emotional life. “I’m too scared to lead a life of impotence and weaknesses,” said the man.
The wikipedia daleks
There are further articles on PSSD in the academic pipeline. So what’s going on with efforts to delete the PSSD page from Wikipedia. In fact the editor who instigated the original deletion – Formerly 98 – has a significant conflict of interest in this area. Despite the seemingly fine but in fact not so fine or gentlemanly argument that the science wasn’t right and the complaints that the only evidence was anecdotal – see Wikipedia Editor Inserts Foot in Mouth, – the basis for the attack on the original PSSD page lay in anecdote.
If we are to find answers, the PSSD community needs to try and get more research going on this condition. If we are to get answers, PSSD needs a salient presence and there is no where better for this than Wikipedia. It would be terribly unfortunate if it the page was allowed to be deleted again.
We might need to call on Doctor Who.