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

General Discussion
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#22

I understood it correctly, you explained perfectly.

My question is: what means safely in your words? (I know what safely should look alike). If those fill ins are just removed without cover and a hoover like machine, you get filled with aerosol like mercury which is even worse cause can be very easily absorbed.

It would be good to post every test you have done and your progress resp.what treatment you have done. Without those information it is impossible to say a lot. Please do that asap. Thx

PS: checked your profile. So, if that state is acceptable for you congrats. I kinda have the impression you might not need any help. Good luck and all the best!

#23

Aha sorry, my mistake. I totally misunderstood. :slight_smile:
Ok, to be honest I say safely because my theets are still there. No harm to my theets. :slight_smile: But in details I dont remember much (because it was prior accutane, where I had no health concerns). I had metal looking fillings and I told my dentist to replace them with non-amalgam. And he did so. now they dont look metal, they are white. I dont know if there are dangerous white fillings but as far as I know metal looking fills are dangerous. Anyway, I still think, these are not the root cause. I mean some friends use 2 days of accutane and got permanent side effects. How is that come?
PS: thank you, good luck to you too. I still need help though.

#24

Hello everyone,

Iā€™m here, because I took accutane during 7 years (yes !). During the cure and after, I suffer of many liver problem and my hairloss began (nobody in my family have hairloss problem).
Now, I loss some hair (aproxymatively 30-40 by day), but with my alimentary changement, itā€™s ok in comparaison with the past.
I have some acouphene problem, but itā€™s not very strong in my case, itā€™s supportable.

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#25

Anyone here recover from the dryness of isotretinoin?

#26

I think the reason is because mainly teenagers take it right? So they and/or their parents probably assume they are just going through normal teenage mood swings and hormonal changes and such? I mean, they are on the lookout for sides being on the drug in the first place, but even so.

I took two rounds of accutane as a teen, it made me depressed, moreso the second time. I was a vigorous cross country runner during the first round, so I think that helped negate the sides.

Btw, it was only depression sides, no sexual problems. I recovered mostly and lived a normal life, but I donā€™t think I ever FULLY recovered from the depression, aka actually get rid of that sunken feeling you get when alone, until discovering distilled water and urine therapy years later. Feels as though those fully ejected whatever problems I was having from my body.

I also feel I recovered from a very brief dutasteride session using the same methods. Iā€™m a total newbie when it comes to understanding this stuff however, so what do I know.

#27

What is this? Iā€™m very interested to hear what the protocol is for that.

#28

Check out my post here:

If you have any more questions let me know!

#29
#30

I have two guesses for you: One is that Accutane is much more expensive than Propecia. So maybe the number of patients is much smaller even if the revenues are higher. The other is that Accutane is probably just as much if not more female patients than male patients and sexual disfunction may be less obvious in females than it is in males. For example, female sexual disfunction does not absolutely prevent sex or conception the way male sexual disfunction does.

#31

What you wrote makes sense to me. Nevertheless, wouldnā€™t female Accutane (Post Accutane Syndrome - PAS) patients also suffer from additional symptoms such as depression and varied physical side effects? Or would females be less affected by the syndrome, perhaps because their androgen levels are lower?

In any case, it would be interesting to see more female PAS participation in this forum. Any thoughts on why this is not the case, and how more female participation could be achieved?

#32

Are there many female PSSD suffers? Maybe this will help hone in on the pathology of PFS,PAS,PSSD.

#33

Yes Iā€™ve definitely read a few female related posts over on Rxisk, women in their 20s with gential dryness and numbness. Iā€™d presume itā€™s very similar to a males situation as the clitorus is basically the female glans and where Iā€™d presume most if not nearly all the pleasure comes from, so if thatā€™s numb like us, same situation maybe?
Iā€™d be interested in hearing more about this because I definitely think itā€™s the same thing as us males as females are quite close but structured slightly differently in that area.

Women also seem to talk about sex a lot less in general among eachother from my experience but I could be wrong. I guess female sexual dysfunction is a lot harder to prove because they donā€™t have that visual feedback males get with an erection and maybe their doctors would just say they arenā€™t doing it right or something?

Definitely a horrible thing to deal with regardless of what gender you are.

#34

There are likely many factors at play.

  • As @Devolution said, there is quite a large portion (maybe 15-25%) of female respondents in the main Accutane sexual-dysfunction post on Rxisk and many of them describe physical, and mental, symptomsā€¦

  • There are several female members of the PSSD forum who are regular participants, but that forum has been open to women since it began, including a subforum for females with PSSD. Some of these women also describe symptoms of emotional blunting.

  • Correct me if Iā€™m wrong, but women appear to be less likely to participate in online forums in general.

A close female acquaintance of mine from the acne.org forum suffers tremendously. She experienced libido loss, depersonalizsation/derealization, and blunted emotion from Saw Palmetto, then total sexual dysfunction, loss of emotion, and a slew of physical symptoms, like skin thinning and sunken facial features, after taking Accutane. She has described her condition as being the female version of many PFS stories. We have also discussed some of the reasons females are less likely to mention sexual side effects.

  • A major point is that women may be able to function sexually, despite a total loss of sexual response. Meanwhile, a man needs sexual response to gain an erection for the physical act of penetration.

  • Men are more likely to define themselves according to sexual parameters.

  • Infertility after Accutane has been a major concern among women and there are several studies showing a negative impact of the drug on measure of ovarian reserve. I will try to remember to post some of these studies here this week.

This site has also restricted women from posting in the past and currently has no active female members I am aware of. This might call for an invitation for women to join.

#35

Half of us arenā€™t even very motivated to pursue PFS as the explanation for our problems just because doing so doesnā€™t actually provide any solutions, itā€™s all very complicated, and it puts you at odds with accepted beliefs in the medical community. There are all kinds of potential causes of depression and reduced libido. I think females who have the syndrome, since they are able to continue to have sex and children anyway, are less motivated to try to figure this mess out than men (who are rendered unable to do either of these things). There is also not the same expectation of women to ā€œperformā€ sexually that there is of men.

#36

Hi Everyone,
Is there anyone in Brisbane, Australia who would like to chat or possibly meet up? Personally I get tired of reading forums all the time and so just looking for some local support. Perhaps we could talk to some doctors together?

MT

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#37

Does anyone have an idea on how we can find more PAS / Accutane sufferers to take the survey? PSSD has made huge progress these past days (thanks again to all the PSSD people who came over for this, and to all those who helped spread the word). It would be great if we could get Accutane/Isotretinoin to at least the same level.

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#38

On a small level, while we work out how to reach more people, can everyone ask one other person to complete the survey? If youā€™re a PAS / Accutane person (but this applies to everyone reading this), can you reach out to one person in your community and push them to take the survey? This isnā€™t enough, but it is one EASY thing we can all do.

3 Likes
#40

I think that in addition to the survey, we should encourage people to do DNA testing on page 23 andme. If someone did not do this research, I encourage you to do so.

#41

Do you say this because the survey asks questions that canā€™t be answered if someone is/was sexually inexperienced at the time they developed PAS?

I had trouble because of those types of questions also and had to guess how I would have performed sexually if I had been with a partner at the time.

ps- Thanks!

#42

I have send you a PM