PAS, PFS, PSSD common denominator?

After treatment definitely, but during treatment might be a total reversal of hairloss. I’m not a true believer in the DHT hairloss stuff due to my own experience, I think an inflammatory response has a key role to it. Like how accutane stimulates the adrenals/cortisol, could lower follicular inflammation.

I think its pretty safe to say hair loss can occur while on Accutane, its a documented and well known side effect similar to vitamin a toxicity. I sure wouldnt take Accutane to try to treat hair loss. Just like what they say with Fin with sexual sides, its suppose to grow back after treatment or is temporary.
Thats not the case.
Plenty say while alot of their hair did grow back, it was never as full and thick as it used to be.
I am in the same camp as you though where my total diffuse hair shedding didnt start happening until after I came off the drug. Scalp hair, eyebrows, and body hair thinned out and my scalp hair never returned to full thickness. Scalp hair seemed to wax and wane almost similar to an allergy or immune response.
Thats actually what my dermatologist told me that prescribed Accutane when I went back and told him. He said it wasnt the Accutane and he thought it was allergies and would come and go.
He wanted me to go see the guy that invented rogaine in Chicago.
Accutane definitely provoked this and It never corrected itself.

All the substances are antiandrogenic to some degree.

Right, but I’m also saying propecia treats hair loss while Accutane causes it.

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Finasteride was actually found to increase rate of shedding beyond baseline after cessation.

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From what I’ve read high and low levels of Retinoids can cause hairloss, like it needs a perfect balance.

Does finestride mess with RA levels , have searched but can’t find anything?

No, but excess retinoids mess with androgen levels.

Maybe we just dealing with some type of increased inflammatory thing. I have made some improvements on antibiotics and it looks like PFS people do to. Maybe something in that.

Do you know if Trazadone is anti-androgenic? I am surprised that SSRI would really have a lot of effect on androgens if its effect is as indirect as I understand, which is basically that they increase serotonin somewhat, which in turn has impact on androgen levels.

I cannot give medical advice, but I can share anecdotally that I knew someone with severe sexual dysfunction side effects from Accutane. He was prescribed Trazodone by a doctor and it resulted in major worsening of his sexual symptoms. I believe he later took his own life. Be careful.

What about the common denominator being Fatty Liver??? Thoughts ???

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I’ve exactly taken both of those, and I do think I had medium level sexual symptoms after the Accutane and then much worse sexual symptoms after the Trazadone.

Does finestride lower cortisol like accutane?

I’m sorry to hear that. The guy I knew was in the same situation - bad side effects from Accutane, then further damaged by Trazodone. He ended up unable to function day-to-day. A horrendous situation.

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I am getting by otherwise, but have effectively lost all sexual sensitivity. I am holding out for a cure. But it seems like basically the only person trying to do anything is awor and the other mods. It’s as if no one gets that we are all screwed unless we do everything possible to get research funded.

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Various people are helping, besides us staff. What I personally also find very encouraging is that increasingly collaboration is happening between this community and the PSSD community. Even if many may not be convinced about a common root cause at a biological level, it at least has become obvious to most that the syndromes look pretty similar from a clinical perspective. I feel working together across communities will eventually give our efforts a much needed boost.

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It would be great if people could all agree on a thread where tasks might be recognized and assigned to members of the community. For example, has anyone engaged the Accutane community on places like acne.org to tell them about the potential commonality of syndromes as well as our 23andme study and survey? If not, then someone should do that. I would be happy to myself, even though I basically have 3 full time jobs right now.

I’m glad you are optimistic about the communities becoming more unified. Just out of curiosity, has there been any particular activity in that area that I might not be aware of? I wasn’t aware that anything has actually been going on. Rather I thought we here have been talking more about that it should happen rather than is.

Yes, we’re working on the 23andMe together, for example.

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Yes, this is an idea we have had a while back. We actively encourage members to get involved in our projects - and have a board for this - the Community Projects board.

We’ve got a thread here where users can freely work with us on tasks…

We are continually seeking people with useful skills (e.g. statistics; SEO; e-marketing) so if you can offer anything, maybe send us a message?

Most of the staff helping on the site have come onboard that way, then have found a niche helping out with community engagement, simple blog posting, drafting site content. Others have got more skills in computer tech and worked on impressive projects like putting the survey together, on this site.

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Hey @vkg1

Just to answer this, as I think you mean taking on tasks relevant to helping the initiatives we already have, you could certainly start a thread to delegate tasks about things like you give an example of there. The survey is the most important thing we have, and it would be absolutely fantastic to get more isotretinoin contributions as a priority (although every one helps).

Within the staff we have structured tasks and operate on delegation. As awor and I do a lot of the heavy lifting (site operation and maintenance, survey design and technical design, analysis and results organisation, significant literature review, scientific contacts), we absolutely rely on the fantastic and constant work of the moderator team. Certain mods like @greek spends a lot of time helping indispensably day to day on the community level, @pete focuses on great stuff on the blog, and @Jaime has taken a role liaising with media/organising media projects. @Northern_Star has been doing great outreach to get the PSSD communities to participate in the survey and @Dubya_B is starting on the 23andme with others to see if there’s a chance of an interesting result there.

Obviously more are involved, but if you have ideas or can lend a hand relevant to their areas, you can also always message the appropriate moderator to lend a hand. It is appreciated, it’s just it’s not always going to be instant given the workload on our plates.

Best,

Axo

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