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

General Discussion
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#107

I just PMed you feel free to chat! @stephane1

1 Like
#108

You guys could also use the French sub-forum. I understand that sometimes chatting via PM can be more “personal”, but in general sharing with the broader community is better.

5 Likes
#109

You can make our forum your home :slight_smile:

https://forum.propeciahelp.com/c/fr

It’s all yours.

2 Likes
#110

@anon90613791 , thanks but we don’t have yet a rescousse about roaccutane, Asso APESAC is changing the rules of class action and compensation in France about Dépakine, since last months, and so for other drugs. But more we’ ll send medical records to https://www.aaavam.eu/ , more we have chance to win.

#111

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

they are here :
https://www.facebook.com/groups/214733665588935/?multi_permalinks=796051174123845&notif_id=1563942222444564&notif_t=feedback_reaction_generic

https://www.facebook.com/groups/1736745353300361/permalink/2053125848328975/

and

https://www.facebook.com/groups/AccutaneSurvivors/permalink/3119235148117036/

@ Northern_Star , @ lakehouse @ Greek @pete @ frenchfries

I strongly suggest you to regularly comment these publications above, with diferent persons , spaced in time, where i talk about your survey on facebook in order to place the post on the top the more longer as possible, it is very important to have a visibility on the facebook flux ( where information disapear fastly on the flux).
Mostly comment when there is a lot of person ( end of afternoon) because there are other post who erase of the top, and also more visibility!

Thanks also to do same think and add comment on next messages for the same reason to help me to bring people on roaccutane french group and inform them, on these posts :

https://www.facebook.com/groups/AccutaneSurvivors/permalink/3113066222067262/

https://www.facebook.com/groups/214733665588935/permalink/794806940914935/

we have to profit of the number of volunteers of your community :wink:

thanks a lot!

3 Likes
#112

Bonjour Stephane, Idk if you saw my comments re using facebook for discussing delicate personal/health issues:


Facebook is a horribly bad idea for dealing with groups like ours. If someone is in contact with these group admins, perhaps get them to reconsider their platform for the reasons I posted above.

In any case, merci beaucoup for your help in liaising between the french groups and this community.

3 Likes
#113

Hello awor, and thank you for your thoughts and advice on social networks. I completely agree with you. However privacy does not really exist anymore, because your internet access provider records everything too. The advantage of facebook is the census of people with the same problematic, but we agree that this kind of flow is the enemy of good information because its quantity is inversely proportional to its quality, and everything is very quickly drowned in the mass. Moreover, it bothers me about this kind of forum where unregistered people can see all exchanges (some forums are private in part, this is a plus), have a good day, cheers

1 Like
#114

@awor so far only one french PAS patient that wants to participate. However she doesn’t speak english and has difficulties with making the survey because of it. Ofcourse there is google translate. But it might be better to just give a list of translated questions? (If possible ofcourse) so there will be no translation faults.

#116

thank you stephane. I suggest telling them about the funding access possibility if we can all fill and reach the goals.

this is a big deal. if we work together we can move quickly with the amount of tools that are available to us and will be in the near future (if we have the budget)

1 Like
#117

the theory is PAS, PFS, and SSRI are all similar in mechanism.

If we can PROVE that by getting massive survey data, we can possibly get access to funding.

thats why we need people to fill these surveys out as much as they can and as fast as they can.

2 Likes
#118

yes but we need several people on facebook (anyone can create an account for this cause even if he is anti facebook) see the post above :
"
I strongly suggest you to regularly comment these publications above, with diferent persons , spaced in time, where i talk about your survey on facebook in order to place the post on the top the more longer as possible, it is very important to have a visibility on the facebook flux ( where information disapear fastly on the flux).
Mostly comment when there is a lot of person ( end of afternoon) because there are other post who erase of the top, and also more visibility!

Thanks also to do same think and add comment on next messages for the same reason to help me to bring people on roaccutane french group and inform them…etc"

2 Likes
#119

thanks stephane, ill try my best to work it into my schedule. im busy with work at the moment, but ill seriously make time to do this.

i also think its important to get in touch with the mods.

are you a mod? if we can convince mods, it will be much easier.

anyone reading this, please consider helping @stephane1out as he has requested.

2 Likes
#120

buhezhed

#121

@lakehouse ,

I know quite well the admins of the French group facebook on roaccutane, but what do you want them to do? They are only two, and have their occupations too … but if everyone re-up early in the morning and early aprem, writing a useless trcu; So each of your site’s investigative post and each of the promo posts of the French iso group, and this on both English groups, every day is perfect. We have a lot of membership on the facebook group, when the promo post is up (but it does not last long).

#122

mod’s be able to tell the group member’s that if they sign up and fill out the survey, they can help us get funding to tackle this problem once and for all.

would they not care for that? its better than posting in a group with no real hope or anything. this is the only place i know where we are making legitimate progress in a correct direction.

after saying that, mod’s should also remind people weekly or bi monthly, to fill out the survey. a simple reminder will push people and move the numbers

3 Likes
#123

To answer the topic question, for me the big difference could be the age groups. Your talking about mostly teenagers or people in their early 20’s with Accutane, vs closer to 30s im guessing on average with Propecia use. It could be alot easier to discern changes in the Propecia group as opposed to everything a young adolescent/adult is already going through in general that also happened to take Accutane, To make all the connections.

Not only that there can be a progressiveness of side effects that worsen with time. so now 20 years later as someone is approaching their mid 30s, do you still associate everything with the drug you took 20 years ago? its more of a “what if” I never took Accutane then PAS as the lines becomes blurred.

Take this study for example,

Severe Acne in Female Patients Treated with Isotretinoin is associated with
Dysbiosis and its Consequences

**Isotretinoin is associated with
dysbiosis, malabsorption (with visceral fat decrease) and signs of
dysimmunity. Symptoms develop more than 20 years after the intake
of the medication taken at usual range and duration

2 Likes
#124

Acne is associated with mood disturbances, especially anxiety [75] and its treatment alleviates symptoms [76,77]. Isotretinoin has previous been implicated in the worsening of depression [78,79].New data do not confirm such a role or even conclude to a positive psychological effect after acne alleviation [80-85]. According to our results, acne it-self (and therefore PA and the associated enterotype) could explain the difference observed between HAD scores in the control group and in patients with severe acne.

In short: we wasted our time taking Accutane.

1 Like
#125

Exactly. Just destroyed lives as well in the process of what was an anxiety issue (at least in my case)

Addendum:
The visceral fat decrease is spot on.

1 Like
#126

Absolutely this. Teenagers are often likely too young, uninformed and trusting to understand what has hit them. It took me twelve years to come to terms with what happened to me and I doubt I’m a special case. I know a couple of others on this board had similarly delayed realisations.

This is one reason I consider Accutane victimisation of teenagers a form of child abuse. Drug companies are taking advantage of young people’s naievete and dependence on adults to give them guidance and model authority in order to push a dirty product for cash.

5 Likes
#127

Couldn’t have said it better.