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

General Discussion
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#147

One reason might be that Accutane users are younger and 50% female. If someone has their sexual function destroyed before it ever really started because they are taking the drug during adolescence and puberty, then they might not know they have dysfunction caused by a drug. Women are able to have sex even without libido whereas men cannot. Libido and arousal are more critical to male sexual function than they are to female sexual function. Maybe a lot more women and children would realize they have been affected by the drug if they learned about the effects it can have.

The average propecia user might have been getting erections and having sex for 20 years before getting shut down by the drug. So its crystal clear for him what the drug did. Thats not the case with accutane.

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#148

This is a good articulation of the problem. Iā€™ve often thought the same, but youā€™ve explained it more clearly.

There is a starker difference between a male who loses genital arousal and a female with the same. So, the negative impact is clearer in Propecia patients, given higher numbers of females taking Accutane. It doesnā€™t explain all of it, though.

Additionally, many youngsters will be thinking ā€œmy body is going through changesā€ - generic thoughts, and fail to make the connection unless the negative side effect is particularly strong. There are more youngsters on Accutane and Propecia, again influencing the web presence.

This is why it is necessary to increase our public output onto social media. If a larger number, over time, start to make the connection - we build a giant snowball and, perhaps sooner than we think, an avalanche. Also, anything we do that makes our site less amenable to Accutaners is bad news. The decks are already stacked against us - no point worsening the situation.

In any event, the Accutane group still requires a lot of effort and we majorly need to get the survey numbers up.

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#149

If I may, @vkg1 your analysis is correct, but incomplete. If you look at the pharmacovigilance charts at WORLDWIDE PHARMACOVIGILANCE ( WHO) : Accutane, Propecia, isotretinoin, finasteride, roaccutane, proscar, isotretinoĆÆne and the countless testimonials on isotretinoin, unlike finasteride, where libido disorders come first, in the case of isotretinoin, it is primarily the gastro intestinal disorders, then the psychiatric disorders (depression), and only in 15 th position sexual disorders.

The common point is that these disorders and side effects cause general organic fatigue, sometimes without the causal link being made, medical wandering and accusations of hypochondria, and all of this induces depression in the psychiatric sense, but This is in the first place an organic weakening, which psychiatrists do not know, because it is often indecipherable.
cordially.

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#150

To my understanding, pharmacovigilance mostly looks at symptoms while on the drug and not after quitting, because the whole notion of having symptoms from a drug despite not taking it anymore is generally not accepted. The symptoms can be quite different in distribution and severity while on vs. off the drug. In other words, I am generally quite skeptical about pharmacovigilance data for this reason, until proven otherwise.

However, if you say that users mostly report gastro intestinal issues and not primarily sexual ones, I would consider as more valid data. How do other isotretinoin users with community experience see this?

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#151

Pharmaco reports do not really make the kind of distinction during or after, it seems to me ā€¦ and it does not change anything or so little, because the symptoms are often irreversible, and others are sometimes added or are aware later. Iā€™m talking about pharmacovigilance because it is official and representative a little, I have not quantified the testimonials, but you can go and see where the isotretinine long term sufferers are : on facebook groups dedicated, or, if you read a little the french, see the comments posted on http://avrg.unblog.fr/forum/. Empirically, what emerges mainly is the depression (more common with finasteride, which is a consequence of the second degree of poisoning), chronic fatigue, joint pain, dermatologics problems, rectocolitis, sometimes cron and fibromialgia, sometimes cancer too.
Regards

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#152

I have already explained several times, people with accutane who arrive hard on your forum do not register, because it is completely focused on finasteride and therefore libido disorders. But a shortcut and an error made here very often is the confusion and amalgamation of the different consequences of the two molecules. Thatā€™s why I proposed to create a part dedicated to accutane, which would make more coherence and order, and also, accutanes victims will feel less secondary. Another annoying point is that itā€™s embarrassing to talk about libido, even more so when you do not have that kind of problem. Here are the reasons why people suffering from l iso will go first more about the facebook group dedicated, because even if it is not a forum format, I think that made a mistake by saying that it is a horrible idea to deal with them, well at opposite.
Accutane suferers are 4 times more numerous than the victims of finasteride. Accutane is reimbursed.

You have to adapt to things as they are. I am just as anti facebook as you, facebook reads PM, records everything, the flow is ephemere for us humans but not for their data storage, ok. But most people find it easier to go to facebook. You have to adapt.

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#153

I would think since libido is embarrassing to talk about an anonymous forum (like this) would be more conducive to open discussion than Facebook, which is practically the opposite of anonymous showing people not only your name and photo but also all kinds of other personal info.

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#154

Here are some stories that always stood out to me. The first one is gone now, but I saved the headline awhile back.
I would categorize at least one of these outside the realm of pfs, maybe both. Should a person think the first story is a androgen driven issue at its core?

ABCNEWS
Megan McKinley, 19, had been an honors student until she took Accutane, the popular acne drug.

Once on Accutane, she began experiencing fatigue and memory loss , and her mother, a psychotherapist, asked the doctor if her symptoms might be connected to the drug. The doctor said the drug and her feelings were unrelated.

Megan improved after she stopped taking Accutane, but when placed back on it for another course of treatment, she had a ā€œbig meltdown,ā€ and never quite recovered. Today, the young woman often spends days crying, cannot concentrate and cannot attend classes at school. She is finishing her education at home.

Heres another story,

Elin Rowlands has lost 92% of her pancreas, has been left diabetic and has lost all of her hair after being prescribed doses of up to 70g of Roaccutane to clear her skin.

Im not big on the facebook idea myself, I dont need everyone knowing everything, especially coworkers. thats not a benefit for me personally.

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#155

All Iā€™m saying (many times) is that the main problem with accutane is not libido, and thatā€™s why you have so few people suffering from accutane here because there is confusion. Then, faced with the same problem as you to find accutane community, I saw that they are on facebook. Thatā€™s all. The question is not to discuss about facebook, or to give or not your photo or your testimony to the data of Mr. Z. Misunderstood: you don t have to put a photo or testimonial, you just have to put posts on top after create an account with pseudo, that i did. The question is to have people who respond to your survey, and feel considered here, and not only used. So we have to keep the posts up by commenting on accounts, and thinking about making a non-amalgamated place to accutane here. When I remember that one of you here tells me from the start that " we are the best team, etcā€¦" (that is, and all the others don t obviously), and that all any personal initiative are useless on accutane, but now i can see you do not look to really know acutane ā€¦ I do not judge. But i give up waste time on those proud vibes and mistake of understanding (No bad faith, I hope). Go read pdf with all study on accutane i posted firt hereā€¦

280 pages of all studies about iso, with summary with hypertext links page 4 : https://www.cjoint.com/doc/18_08/HHDvuUoSvXb_-ScientificStudiesOnIsotretinoinCompleted.pdf

I may be French with all the assumptions you have on it, but in the meantime, i dont groan with an inconstructive and erroneous way.

While some moan, some keep your promo visible.

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#156

Maybe admin should make clearer distinction with separate subforums for accutane, fin and ssri ? Maybe that would attract some more PAS ? Or even possible to collaborate with PSSD forum ? But that would be a large step, because as far as I understand admin wants to keep focus on PFS. But so far it is largest community I found which pushing things forward. At this moment PFS, PAS, post SSRI should unite because the syndrome seems to be the same in the every single aspect.

From different accutane forums I have been, the sexual sides is one of the main problems. And also from my iso experience.

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#157

delete

#158

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 ā€žPFSā€œ. 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.

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#159

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

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#160

Hi @skorpio88,

Iā€™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.

Itā€™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.

Iā€™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.

#161

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.

#162

Iā€™m sorry it seems that way to you, I didnā€™t intend that at all. I wasnā€™t commenting on your motivation for taking either substance. I was trying to say that while you say you have PAS and PFS, itā€™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 ā€œby trying to treat your PASā€ nor did I try to imply it.

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#163

Why donā€™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.

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#164

It can take a long time ā€¦

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 ā€¦)
:
but especially the summer holidays in this moment, a wait-and-see attitude in France, also mixed with a massive discouragement faced with ā€œsolutionsā€ that are so numerous, contradictory and inneficacious for the most part when they are not dangerous.
And Iā€™m only talking about our hard cores ā€¦

PS : why not add the androcur, progestogen synthesizers and generics to your study? (see asso AMAVEA in France and also the anticonvulsants (dƩpakine 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 ā€œcureā€ hirsutism and cause meningiom, accutane cause hirsutism and is supposed ā€œcureā€ meningiom.

there is a linkā€¦

First teratogenic drug : isotretinoin.
second teratogenic drug : depakine.

We can link fina, iso, on first degree,
progestogen synthesizers and iso on same degree.

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#165

@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!

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#166

No worries @lakehouse, and thanks for your support :slight_smile: cheers!

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