We are discussing ways to attract more PSSD and PAS patients. It is not as straightforward as one may think, though.
The admins are not focused on „PFS“. It is the exact opposite. Since the relaunch people with PSSD or PAS are actively encouraged to join. There is good reason to assume that all these conditions are at the root in fact one and the same and it is one of the overarching strategic objectives to unite all the respective patient communities behind a common cause.
I took accutane as a teenager and then afterwards I took propecia in order to fix the hairloss caused by accutane (obviously I wasnt aware that my hairloss at the time was caused by accutane). I have not only PAS but also PFS on top of it
the good news is that I have gone from completely impotent to somewhat functional (but on the low average end) by doing lots of different homebrew treatments over the years. From my own personal experience as someone that has both PAS and PFS, I can say that there is definitely a degree of crossover in terms of how effective treatments can be for treating these conditions. I strongly suspect that things that can treat PFS can also treat PAS to some degree, although I would assume that many people here already suspect that so maybe im being a bit redundant
Hi @skorpio88,
I’m somewhat duty bound to point out that PAS and PFS cover so many similar symptoms that we believe that we will eventually be able to prove that they are in fact the same condition.
We have numerous reports of people who have added symptoms to their condition through multiple uses of anti androgenic substances and I would suggest that by using finasteride after Accutane, you did just that.
It’s important that I point this out as Accutane and Finasterife and SSRI patients, etc. need to band together to have our shared condition recognised. It is important that as many people as possible take part in our survey and other projects.
I’m happy to hear about your success with improving your symptoms, we will shortly be launching another survey which you will be able to share your hits and misses with the forum.
I suggest that you reread my post carefully. I said that I took finasteride after I took accutane, however I did not take it as a way to treat PFS rather I took it as a way to deal with the hairloss that I was experiencing at the time which I was unaware of being caused by accutane. My usage of finasteride happened years ago (nearly a decade) before I even realized I had PAS or PFS for that matter. In other words, you appear to be suggesting that I knowingly took finasteride to treat PAS and if this is what you are suggesting then you are flat out wrong.
I’m sorry it seems that way to you, I didn’t intend that at all. I wasn’t commenting on your motivation for taking either substance. I was trying to say that while you say you have PAS and PFS, it’s more accurate to say that you have what we might call post drug syndrome and worsened it by using the second anti androgenic substance, perhaps resulting in new symptoms. At no point did I say “by trying to treat your PAS” nor did I try to imply it.
Why don’t the french people from FB group come here to fill out the survey. as far as i understand they are informed. Thats really weird from their side, when they have opportunity to make quite significant contribution towards further studies.
It can take a long time …
Even those in our hard core did not do it all.
There are several reasons for this, apart from the ones I have detailed for my experience above
(the barrier of language, distrust of the unknown, and slightly different side effects, which in no way removes the great similarities of the two syndromes. Feeling of a superficial knowledge of PAS, of an ambiguity or at least of a minority of PAS here, reluctance to expose oneself on a readable forum of all, etc …)
:
but especially the summer holidays in this moment, a wait-and-see attitude in France, also mixed with a massive discouragement faced with “solutions” that are so numerous, contradictory and inneficacious for the most part when they are not dangerous.
And I’m only talking about our hard cores …
PS : why not add the androcur, progestogen synthesizers and generics to your study? (see asso AMAVEA in France and also the anticonvulsants (dépakine and asso APESAC in France), because the victims of these two drugs are much better organized and powerful in France.
to simplified, progestogen is supposed “cure” hirsutism and cause meningiom, accutane cause hirsutism and is supposed “cure” meningiom.
there is a link…
First teratogenic drug : isotretinoin.
second teratogenic drug : depakine.
We can link fina, iso, on first degree,
progestogen synthesizers and iso on same degree.
@stephane1 apologize on not showing out on facbeook
im drowning in some things, mix of work, family etc.
i still want to help but i can barely even find time to peek this site for a couple minutes. bear with me!
You might want to check out the following information about a potential link between Accutane and bowel diseases:
I emailed the scientist who performed the study on changes in gene expression during treatment, but received no response.
This may be of interest to those law firms and plaintiffs who are seeking a causal relationship between the drug and UC/IBD-type symptoms.
Good job Dubya! Getting the word out there is important, even if they do not reply to our emails.
I have post Accutane syndrome, and have lurked for a while. I completed the survey recently, and will try to contribute otherwise in what ways I can.
Thankyou for taking the survey. It’s really important and very helpful for you and everyone else.
One thing you could do is complete a member story and participate in discussions often. We need the diversity!
Can you encourage other Accutaners to sign up to our site? If you visit any other forums, ask them to sign up here and complete our survey. It’s a straightforward set of questions. It will bring us closer to understanding our syndrome - and ultimately, the possibility of treatment.
here I am 8 years after taking completely destroyed accutane and I don’t know how solving suicide is the only thing that comes to mind.
I set up and ran pasforum.info as I wanted to create a place with just info on accutane as it was lacking. I also liked the idea of having a forum with only PAS sufferers in one place. I initially put a fair bit of work into it and wrote out a lot of theories and research on there but the forum has unfortunately died a slow death and I don’t have time to put effort into growing it anymore. Dubbya asked me if I would migrate over here a while back but I declined. I am now happy to do this. I agree that we need a more effective way of keeping in contact with PAS people. I am sure the number of people with PAS is fairly large.
Thanks for reaching out, @flynn! I am sure that @awor will be in touch.
Since you seem to be a long time PAS sufferer, could you please take our survey. We had some discussions with scientists and were encouraged to get more data. Participation from the PAS crowd is lacking, unfortunately. Every entry counts!
Please find more information here: Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate
Thank you and take care,
N.
No worries mate.
Yes filled out the survey. Will post some recent ideas I have on here very soon.
I like the look of this forum and community. My only question is could it be organized a little differently? I think it would be very useful to have an area related to PAS and an area related to PSSD for example to organize information in the same place. I.e. if a person comes to this website to find out specifically about PAS, is there any easy way for them to access this information? or do they have to sift through lots of random posts to find posts related to PAS.
Also I want to post a long thread examining what I think is a strong possible cause for PAS. But I am unsure where to post it? Surely it will just get lost among lots of other completely unrelated posts?
Essentially is it not possible to have a category for PAS and a category for PSSD?
We have decided against categories because of overlap with existing categories. The tool of choice for what you are looking for is TAGS (see hamburger menu > tags). We have one for Accutane and Antidepressants too. All it takes is for PAS/PSSD patients to make sure that their posts are tagged accordingly, assuming they are PAS/PSSD specific of course. If everyone helps to keep this place tidy, then finding things is easy. It’s like at home 
cheers!