A Post isotretinoin syndrome victim

Member Stories
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#2

Hi there PAS and welcome to the forum.

Thanks a lot for sharing with us your experiences with accutane and for providing such a detailed account. I’m really sorry that accutane has had such a negative impact on your life. Although it has impacted tremendously on some of your formative years you are still a very young man, although I know that doesn’t take away what you have lost. Try also to not carry the burden of how what has happened to you is or will impact your parents. I’m sure that they wouldn’t want you to suffer more through worrying about them worrying about you. I know that it is a vicious circle. Maybe if you had a friend or a medical professional to talk to it might lessen that burden somewhat. As you may know the pfs foundation are funding studies which are already bearing fruit and as a community there are also initiatives taking place: Important Announcement: Two Community-Led Research Projects - Please Participate so hope has never been so tangible.

Your joining the community is part of that movement towards us all getting better.

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#3

“Tried RU, which has worked for PFS victims” Can you elaborate on that please ?

#4

Hey mate, many PFS victims tried taking mifepristone in very low doses (around 10 mg, they experimented higher and lower around this number) and had improvements in days. They took it for 4-5 days and stopped, slowly the benefits subsided but their baseline still increased permanently a bit. So currently many people are slowly cycling this.

This isn’t my idea and I tried it but it didn’t work for me ( remember I am PAS). I don’t know the rules here so I ll refrain from posting the forums name until the mods approval, although I don’t think it will be a problem since this isn’t a competition. I ll pm you in the meantime.

#5

Hey man, I would absolutely be down to take the 23andme test. Do you know if any discount is gonna roll by so it would be better to wait until then? I just took an HTMA test and that set me back by 150$.

#6

Hi there PAS. I’ve no idea when their next discount will be. I hear that it’s a couple of times a year. You could always try contacting them to ask as they’ll definitely get your custom when it comes round.

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#7

Hi PAS, what dosage of mifepristone did you take and for how long? Also was it a reliable supplier? I really think mifepristone could still be worth trialing properly but dose and duration need to right.

#8

Hey flynn, i asked a lot of people to try mifepristone when I had done so we could have actually an appreciable number of people going through it at the same time.

The fact that it worked for @Ronnie99 , while being only n=1, with the paper that he and @yedek1 linked sheds some light.

A few other people had tried this IIRC. I had taken the idea from them but I think whatever response they had wasnt good enough to deem it a cure. I was the only PAS though.

The course everyone did then was to crush a 200mg pill into smaller pieces and take those over 4 or 5 days or so. That dosage shouldnt have been risky

Ronnie did dosage that was very different, so I cant attest to it being 100 percent safe just because I didnt get worse from my trial.

I have been taking rhodiola for a month for not much effect as of yet.

But ever since that post by yedek that day, mifepristone hasnt
left my mind for even an hour. The thing about Pas is, that its more than just our anhedonic, ‘mental’ changes.

My skin became completely dry in one day, a sharp contrast to my original skin which was so oily that my nail would form a reef of oil if I ran it through my nose.

My hair fell off, all of it. In months, this is coming from a 20 year old boy.

I lost all my natural muscle mass. My beard stopped growing. All of this in one day ( muscle mass over weeks).

These symptoms make me feel an adaptogen wont be our cure. I tried mifepristone and tried procuring dht for this purpose, as they affect the upstream hormones rather than try and handle the ‘mental’ changes as adaptogens do.

Since we have nothing else in our hands anyways, mifepristone might be a worthy trial. Don’t know how badly it will react with rhodiola. Rhodiola is heavily prohibited when undergoing a course of serotogenic drugs since rhodiola itself is a strong herb.

#9

Hi PAS,

After I took the Mifepristone, during the first week I didnt feel much at all, so I said to myself this didnt work. Then another week later I started noticing subtle changes, less anxious, higher libido, a sense of well being returned, energy returned, these changes built up. For the first time I felt about 90% pre PAS.

Then as time went on after 5 months Instarted noticing the effect wearing off, energy was coming down, well being was falling, but interestingly my libido was still there, harder erections and much more interested in woman, this is still with me today.

Regarding the side effects that returned, my gut and intuition feeling is, Mifepristone reset something in the body, but overtime a mechanism or something just again put the body eventually in a post PAS state minus the sexual improvements.

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#10

I Just read your story, and I can relate to every symptom and side effect you got. Even the ones related to dreams, sleep, beard, thumb clicks, post ejaculating effect. (I’m a PAS suffer)

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#11

Have you done or thought about cycling it?
Do you anyone else who has tried it?

@flynn @yedek1

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#12

Such a stupid thing that took away our life man.

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#13

Same exact fucking side effects here. All of them.

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#14

Hey PAS sufferers! Wanted to ask you if you at least experienced some improvement in sexual sides over time? Unfortunately I never read positive stories from accutane users, I seems PAS recoveries dont exist to me. What do you think about it?
Hope you are all getting better!

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#15

No improvement here, more so I would say it has gotten worse over time, I had a few very brief recoveries that lasted a day or so, but the last one was years ago.

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#16

All those here who suffer from persistent side effects after Isotretinoin should participate here: Here because of Isotretinoin? You must read this topic

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#17

Thats sad to hear! Maybe its stupid but I have to keep some hope otherwise I cant live on

#18

I will cycle this and report back here, just trying to get a reliable source

#19

Im thinking of giving it another go in January for 7 days.

#20

Life ain’t over yet mate, gotta grind on. You never know whats round the corner. Cure/fix could be closer than people think.

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#21

@PAS Do you feel better? You are the only one that i can relate to, if i had to write my story, it will be exactly the same as yours. Hope you are doing better.

@flynn ̶ ̶I̶ ̶r̶e̶m̶e̶m̶b̶e̶r̶ ̶t̶h̶a̶t̶ ̶y̶o̶u̶ ̶c̶r̶e̶a̶t̶e̶d̶ ̶a̶ ̶f̶o̶r̶u̶m̶ ̶e̶x̶p̶o̶s̶i̶n̶g̶ ̶p̶o̶t̶e̶n̶t̶i̶a̶l̶ ̶c̶a̶u̶s̶e̶s̶ ̶o̶f̶ ̶P̶A̶S̶,̶ ̶w̶h̶a̶t̶ ̶w̶a̶s̶ ̶t̶h̶e̶ ̶u̶r̶l̶ ̶p̶l̶e̶a̶s̶e̶?̶ Also, how do you feel now?

I found the url: https://www.pasforum.info

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