Where are all the Post Accutane Syndrome (PAS) / Isotretinoin sufferers?

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.

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Good job Dubya! Getting the word out there is important, even if they do not reply to our emails.

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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.

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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!

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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.

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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.

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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.

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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.

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No worries mate.

Yes filled out the survey. Will post some recent ideas I have on here very soon.

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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 :wink:

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hey welcome

if i understand you correctly, you have ideas to bring a lot of PAS folks to this board?

Yes well I have already posted quite a few of them on my own forum but I have recently been writing about a theory I think is quite plausible. I will post here soon

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Please be sure to check our rules with regard to theories here: https://forum.propeciahelp.com/faq

Please also check the Post-Androgen Deprivation paper and how it may relate to PAS: https://www.propeciahelp.com/post-androgen-deprivation-syndrome-abstract/

Personally, I think we need to get scientists involved into researching this condition and for this we need data among other things. So it would be really helpful if you could help to increase participation of the PAS community in our survey.

I will make sure to read your theory, but a lot questions could already be answered by relatively theory-independent research, e.g. assessment of genetic patterns that make us susceptible to get this condition and assessment of gene expression in symptomatic tissue.

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theory to bring them here?

or theory about this disease?

I have written in depth about a few possible theories of how PAS might arise. I just posted one on this website related to progesterone. These are of course just theories and could be wrong.

okay, i guess we were talking about different things

i was talking about getting more PAS members to fill out the survey

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Exact. We must connect with each other. Build a community. Gather collective effort. Without a voice. We are low priority and no change will come.

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I second that :+1:

Here’s one right here. I’ve never felt joy since taking Accutane that’s the worse part for me

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