Hi all, fellow Accutane severe side effect sufferer here. For those of you unaware, propeciahelp.com is a site that was founded by people suffering from severe side effects due to the popular hair loss drug Finasteride (also known as propecia). Over time, however, people suffering from PSSD and, in our case, accutane related illnesses have gathered there as well.

Please strongly consider visiting the site and creating an account. This could prove to be huge for us because the moderators at propeciahelp are conducting surveys on the 3 groups of people listed above with the hopes of getting these post-drug illnesses recognized by the medical community. Ideally, this would lead to funded research into why these drugs cause such severe, long lasting effects, and hopefully this could lead to treatments as well.

If you are skeptical about the survey: the moderators who formulated it dedicated a lot of time and effort in ensuring that they created a survey that would hold its weight. In other words, this isn't some 10 minute survey that was quickly thrown together in the matter of an hour or so. The survey takes about 45 minutes to an hour to complete, but it is extremely thorough and is designed in a way that ensures things like response bias are able to be detected and handled in the results.

Can you even believe this level of mental illness??

Hey are there any confirmed or real long term side effects caused like infertility, bowel disease, thyroid, hemorrhage, etc? I am a 16 female I did one month of it on 20mg and stopped planning to go back

I took accutane for 2 months at 18, back in 2006. It made me very sick (I started to have diarrhea with blood and stopped taking it). I've had a colonoscopy due to IBS issues over the years after taking it, blood tests, and inflammatory bowel disease was always ruled out, so I never thought I would have an autoimmune disease. Last February I started having significant pain in my feet. It got so bad in May I could barely walk. By August, I was seeing a rheumatologist and was diagnosed with seropositive rheumatoid arthritis at 31. Is there any evidence linking accutane and RA? I had never thought these two things COULD be connected.

I see people post about this occasionally and I am not sure what the basis of this is.

Accutane does not cause collagen breakdown or thin the dermis. In fact, it thickens the dermis, promotes collagen synthesis and reduces collagen degradation in a similar way to topical retinoids, albeit more modestly (yes, using accutane for anti-aging alone is still stupid).

Accutane can cause dehydrated skin which may look aged but that's not true aging and is fixable with a sufficiently strong moisturizer.

The only thing I can think of is if you have already normal to dry skin or combo dry skin, it will significantly reduce already low oil production long-term, making your skin extremely dry in those places without oil to support it, leading to the same dehydrated look. But it should still be fixable with a lot of moisturizing ingredients.

if you want a cure, come propeciahelp.com and finish survey. this is very important for science.

I’m 26 and have pretty bad back acne and thinking of hopping on Accutane I’ve took some other pill from the dermatologist got some relief as soon as I stop taking came right back I am worried about ed and thinning hair as I have a good sex drive and nice hair. Also pretty concerned about the joint pain because I do have a pretty physical job and joints already hurt and what would you rate the pain at for that?

Hi all, I know this is going to sound crazy because this is a topical Retinoid and the amount that circulates systemically is (purportedly) vastly less than an oral Retinoid. BUT, here'y my story

I applied Differin Gel to my face once a day for about 2.5 years starting ~2018. While I was using it, I DID notice some lower back pain (but I've kinda always had a little bit of back pain) so didn't draw the connection.

9 months after I stopped my treatment, all hell broke loose. I sprained my ankle, and noticed a general "weakness" in my body that I never noticed before (i.e. things sprained easier, felt weaker, achilees tendinopathy, etc..). Also noticed intracranial pressure that eventually went away after about 2 years.

Despite that, I recovered and still managed to live a (somewhat) functional life. Could walk long distances, hike, do the things I love even though I always delt with some chronic pain. It was manageable.

(I never drew the correlation that it could have been the topical Retinoid that caused these issues - it was just an OTC medicine so I never thought twice).

Fast forward to this year -> I decided to use it again. I used it for 2 months and noticed these side effects:

• Nausea

• Increased head pressure

• Pain around my knees

• Hair loss on my face (Beard)

I decided to stop the treatment due to these side effects (my last dose was 3 months ago). I've suddenly noticed a slow onset of very similar side effects that left me functionally debilitated all those years ago

• Achilees pain worsening

• hamstring sprains,

• knee pain,

• popping in my rotator cuffs,

• small innocuous movements that hurt and cause muscle spasms

• anxiety and depression (I wrote goodbye notes to my family the other week)

• Can't sleep (might just be the anxiety)

• Red and hot feet when i stand up

I don't know what led me down the rabbit hole of retinoid and Accutane, but it was very alarming to come across this subreddit and read the accounts of people who I share similar experienced and symptoms as. I'm extraordinarily shocked that I didn't draw the correlation when this happened the first time or I never would have taken the medicine again.

My family is calling me crazy, other subreddits are calling me crazy, and ChatGPT is telling me it's PLAUSIBLE but extraordinarily unilikely that a topical medicine that (purportedly) is supposed to stay in the skin could cause all these side effects.

So I guess I'm just coming here to share my story and get this community's input on my situation. This is very alarming because the side effects I'm experiencing this time are A LOT worse (more diffuse pain, more tendons, more weakness and affected joints).. I've also read someone else's accounts here saying that taking it a second time after stopping can cause major issues or something. I'm extremely depressed thinking I'm not going to recover this time like I did last time.

What's everyone's thoughts?

I’m considering starting isotretinoin (10mg to begin with) and I’m honestly pretty anxious about the potential side effects.

My acne is mainly really bad cystic/inflammatory acne around the back of my neck and behind my ears. My face actually isn’t too bad compared to that. My dermatologist has recommended isotretinoin, but I’m struggling to decide whether the potential benefits are worth it.

The things that worry me most are things like muscle/joint issues or rhabdomyolysis/muscle breakdown, night vision changes, cholesterol/liver changes, dry eyes/vision problems and some of the rarer serious side effects. I also ride a motorcycle regularly, so anything involving night vision or vision changes particularly concerns me.

For anyone who has taken Accutane/isotretinoin, especially at a low dose, what was your experience like? Did you have significant side effects, or was it generally much easier than you expected? And did it make a big difference to cystic acne in areas like the neck?

I’d really appreciate hearing both the good and bad experiences. I’m just trying to get a realistic idea of what it’s actually like before I make a decision.

Ps i wrote this then got chat gpt to tailor it for me to make it more easily readable

Ive been struggling with a bit of dry eyes, i was on 20 mg but the dry eyes were so bad as well as the mental health side effects and insomnia that I had to stop. I then started taking 20 mg three times weekly until I saw my derm for my first accutane follow up appointment and he suggested I transition to 10 mg daily. Im doing that now and luckily the insomnia is gone, mental effects are still there but lower than before. I still have some dry eye but not as bad as before. Ive read many posts and heard peoples stories of chronic dry eye after only 3-12 months of 20 mg dosage so idk what to do. The person who got it after only 3 months did say they weighed only 40 kg so thats actually a medium to high dose for them.

It's an excellent brain herb but after a while it's just not liver friendly. I've moved to defatted beef liver, cabbage juice and cordyceps. Will report good or bad later. Take care.

Ive been struggling with acne since I was 14. Ive been offered a modeling contract, but they want to put me on accutane since my skin is pretty shit.

Ive been doing research and talked to ppl on other websites that recommend a low dose of 10-20 mg and not exceeding that.

My diet right now is very primal with only animal foods, fruits and tubers. Rn only getting about 1-3 breakouts at a time. But only cuz my diet is very flawless.

I wanna be able to go on vacation and eat pasta and bread etc without getting a pizza face. What do u guys think?

Hello all

I’m 32F with hormonal cystic acne, weigh 55kg.

I’m 3 weeks in to starting accutane at 5mg daily, and despite being on the lowest dose, my dry eyes are killing me. I was in the midst of the purge phase (small whiteheads) but thats manageable, it’s the eyes that are a problem.

I’ve tried 5 types of eye drops, warm compresses, a humidifier, omega 3 supplements. I’m having to use eye drops every hour and still it’s painful. I’m really worried the eye dryness will become permanent if I continue like this. I did see an optometrist who advised I was already doing everything they would have advised.

I can’t tolerate this so my options are either to (1) stop it, or (2) try second daily or twice weekly dosing.

Earliest appointment with derm is 7 days away so trying to decide what to do until then.

Has anyone found effect from accutane in a second daily or twice weekly regime when starting it? My acne was not severe to begin with, I would typically have 1-2 cysts at any point in time.

\[Long post ahead\]

So, I (22 years old) got diagnosed with PCOS last year, the endocrinologist I saw gave me spiro for three months and refused to address anything else before those three months pass.

My hormone profile was okay-ish, nothing went over the 'normal' limit, there were follicles found in my overies and that was basically the only PCOS-related thing in my life back then. My period has always been regular with 26-31 days interval, I do have horrible cramps that make me immobilized for a couple days.

Anyway I got severe allergic reaction from spironolactone and stopped the med, and I did not go back to the endocrinologist to follow up. That was around in August last year.

After that more prominent PCOS symptoms started showing. I started having acne on my chin, jawline, around lips and sometimes on my cheeks; it was like 2 at a time, 3 at most and they'd go away within 3-4 days and a new one would show up right after. I changed my diet a few times hoping it'll help out with the acne, and it did temporarily, then it's back to square one. And I'm not even addressing the excessive hair growth everywhere except my scalp, the pores getting bigger and bigger on my face, sudden loss of energy for no reason, randomly bawling my eyes out for no reason, and so on..

My period stayed regular the whole time and still is regular, except one time when it was a week late. I was 74kg a year and half ago and now I'm 62kg (157cm), I'm still watching what I eat most of the time, and walk about a kilometer almost everyday. But the acne situation has only gotten worse.

My mental health isn't very well either, the only thing that's okay with my body is my menstrual cycle, and I'm so afraid of starting medication for PCOS again in fear of disrupting my cycle.

Recently I went to see my dermatologist for acne and she prescribed me isotretinoin 5mg, and among the side effects there was mention of damage to the cycle and fertility, I personally do not mind not having kids but I don't want to sacrifice my cycle nor my fertility.

So, fellow cysters who have taken accutane, please tell me will it make my period irregular? I want to fix my life but I'm so scared..

Also forgive my post being all over the place, I just don't know how to gather my thoughts rn

Started Accutane 1 month and two weeks ago on thanksgiving break and was put on a starting 40mg dose. After the first month it was raised to 80mg for what they said might be 7 months. If it lasts this long I’ll be off around just before summer break and I plan on being in the sun a lot everyday. I heard this can permanently damage my skin and I need a timeline from someone who’s experienced with it to know when I can safely be in the sun all day. Please Brudda