Sotret (accutane) sufferer for ~13 years

Where are you from (country)?
USA

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)
RxISK.org

What is your current age, height, weight?
29 y/o, 5’11", 224 lb, m

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
isotretinoin generic branded as Sotret in approximately 2007-ish when I was 15 or 16 (cant remember exact age)

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
I don’t remember, but I took the recommended dose by the doctor for approximately 2 weeks before quitting due to the severity of the side effects.

What condition was being treated with the drug?
Mild facial acne. Not even that bad. a handful of pimples. Would love to have them back and trade for the side effects.

For how long did you take the drug (weeks/months/years)?
Approximately 2 weeks at age late 15 or early 16.

How old were you, and WHEN (date) did you start the drug?
I believe I was 15 going on 16.

How old were you when you quit, and WHEN (date) did you quit?
Same age

How did you quit (cold turkey or taper off)?
cold turkey

How long into your usage did you notice the onset of side effects?
I began having peeling skin, peeling lips, dry eye very soon after starting. I remember sitting at the school lunch table and looking at my peeling skin on my arms thinking oh god what did I do to myself.

What side effects did you experience that have yet to resolve since discontinuation?
Permanent Keratocunjunctivitis Sicca (Dry Eye)
After quitting Sotret, I didn’t think about it for a long time. A couple years later at age 17-18, I began to develop dry eyes which I noticed while reading with the ceiling fan on. I did not link this to my taking Accutane/sotret a couple years earlier, I just thought I had drier eyes than most and the ceiling fan was causing it.

By the time I was 20-21, my eyes had become very dry and it was all the time. I am unable to wear contact lenses which means I have to wear glasses all the time. Since age 20-21 (I am 29 now) my eyes have been pretty much 100 % dry. For several years I could not find any tratments which helped. At some point I discovered night-time ointment and this is what I have been using. Normal artificial tears just evaporate from my eyes within 30 seconds of putting them in. The night-time ointment gel will stay in my eye for 3-4 hours so that gives me some relief, although it does not feel like a normal healthy eye.

My eyes do not produce any tears at all on a normal day. The only times they produce tears are if I actually cry like if someone dies which is rare. And even then the tears only last for a minute or 2 before evaporating. I do not think people understand how debilitating having constant dry eye is. It sounds like a very trivial disease, but I compare it to Chinese water torture. It is a constant discomfort/pain that eventually begins to drive you crazy.

I have had my Meibomian Glands scanned with a special scan at an opthamology clinic. They told me that my MG’s appear healthy and not diseased. However I consistently score between a 1 and a 3 on a Schirmer’s eye wetness test, which a healthy person’s average score is 20. I have been told that my eye dryness is caused by an aqueous deficiency and not an oil deficiency. This leads me to believe that Accutane destroyed my Lacrimal gland which produces tears and not my meibomian glands which many other dry eye sufferers have problems with.

A further salt on the wound is that dry eye - like many of the other side effects caused by accutane, is not covered by insurance for treatments. Lipiflow, Scleral lenses, preservative free drops, autologous serum, all of the above are very expensive and insurance will not cover due to this condition being considered “trivial”. Dry eye alone is associated with depression due to the bleak outlook of possible treatments in addition to the depression associated with Accutane itself.

Dry skin/lips/eczema
I have dry skin and lips. My lips are always chapping and peeling (mildly) regardless of it being summer or winter. I have a permanent patch of what feels like eczema/psoriasis on the back of my neck, but the dermatologist said it wasn’t eczema but she didn’t say what it was.

Chronic Prostatitis / Pelvic floor pain
Very close to my 22nd birthday, I had an attack of acute prostatitis. I first noticed it while having a painful ejaculation. I went to the urologist who told me there was nothing wrong with me. When it first started, I could barely sit down or pee even while standing up and I was studying for my finals in my last year of university so I was sitting down and reading a lot. After a few weeks I was able to sit but I continued having the painful ejaculations. After about 1 year, I had a cystoscopy at a different urologist to check for a urethral stricture. He told me he did not see any blockage but he dilated my urethra a little bit with the scope. The chronic pain changed after that procedure from sort of a dull-pain that was at the base of my penis (between scrotum and penile bulb, but more inside the body) to more of a sharp localized pain in that same area. This pain has stayed with me to this day. For many years I was a heavy coffee drinker and a couple years ago I discovered that this caffeine habit was exacerbating the prostatitis when I tried going off caffeine. My prostate pain is significantly less when I don’t drink caffeine. However, it is not 100% cured by quitting caffeine. I still have a sharp-but mild pain localized at the base of my penis, but inward towards the prostate which I can feel any time I pee or flex my kegel muscles. This condition has contributed to my depression for many years as I thought I would never have a normal, pain free sex life.

Even without caffeine, I still have difficulty urinating, start and stop peeing. With caffeine, I get incomplete emptying of bladder and have to go back to the toilet every 10 minutes during bad times.

Low Testosterone / sexual issues
I got my testosterone checked at age 27 and it was 516 ng/dl. That is the only time I have ever had it checked. The doctor told me this was in the “normal range” however I looked up and it appears 800-1000 is more normal for a healthy young male. I told her I had ED and she said you’re a 27 year old male you shouldn’t have that and didn’t want to give me viagra. I suspect the accutane stunted my testosterone production when I took it during puberty at 15. Related problems to the testosterone issues include gynecomastia (enlarged male breasts), difficulty losing weight and gaining muscle strength in the gym, ED, premature ejaculation, semen leakage (pre-ejaculate has visible semen in it), and small penis (4.5 inch erect). I believe all of these problems were either directly or indirectly caused by the accutane being taken in the middle of puberty and slowing my testosterone production.

I began growing facial hair and shaving at 12 years old. When I was in middle school girls commented on how deep my voice was. I have always been one of the tallest and biggest kids in the class. I did not have a testosterone issue until after I took Accutane.

I have considered getting tested for kleinefelter’s syndrome because I have wide hips but I have not been able to do that yet. But I do not think I have it because I can grow a full beard.

Gynecomastia
I have had gynecomastia since a young age of 9-10 but it got significantly worse after taking accutane. I have seen reports of gynecomastia developing after accutane use in the literature. This condition has also contributed to my depression, low self esteem and inability to date women.

Depression
Due to many of the issues above I have experienced chronic depression since I was about 19 years old. I have been unable to develop confidence in talking to women because of self esteem issues and am still single.

Hip Impingement
I have CAM-type femeroacetabular impingement in both hips. I first noticed this in 2016 approximately age 24. It was diagnosed by X ray a couple years ago. I have heard accutane can lead to bone fractures and osteoporosis so I don’t know if it is related. My hips are constantly in a dull pain when walking or after walking.

Grey hair
I had my first grey hair when I was a child but the grey hair has gotten to the point now at age 29 that I am pretty much a “salt and pepper” color. About 20-30% of my hair is grey. This is not usual for my age.

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[X ] Loss of Libido / Sex Drive
[ X] Erectile Dysfunction
Complete Impotence
[ X] Loss of Morning Erections
[ X] Loss of Spontaneous Erections
[ X] Loss of Nocturnal Erections
Watery Ejaculate
[ X] Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
[ X] Emotional Blunting / Emotionally Flat
[ X] Difficulty Focusing / Concentrating
Confusion
[ X] Memory Loss / Forgetfulness
[ X] Stumbling over Words / Losing Train of Thought
Slurring of Speech
[ X] Lack of Motivation / Feeling Passive / Complacency
Extreme Anxiety / Panic Attacks
[ X] Severe Depression / Melancholy
Suicidal Thoughts

Physical
[ X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
[ X] Weight Gain
[ X] Gynecomastia (male breasts)
[ X] Muscle Wastage
[ X] Muscle Weakness
Joint Pain
[ X] Dry / Dark Circles under eyes

Misc
[ X] Prostate pain
Persistent Fatigue / Exhaustion
[ X] Stomach Pains / Digestion Problems
[ X] Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
[ X] Frequent urination
Lowered body temperature

[ X] Other (please explain)
permanent-dry eyes
dry mouth

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

One of the worst parts of this is that all of the problems caused by accutane are out-of-pocket uninsured costs and most are very expensive.

Dry eye - I am looking into getting a scleral lens. This is a contact lens which holds a pocket of saline solution underneath it which hydrates the eye. My doctor says it is not foolproof, because only the part of the eye which is directly under the lens gets hydrated while the peripheral part doesnt.

I am also looking into Prokera - which is an amniotic membrane supposedly which heals the eye tissue but my doctor said I couldn’t do that while having the scleral lens and also you can’t see out of the eye which is using the Prokera.
Scleral lens - ~$900-1500 per eye. Should be replaced every 1-2 years.
Prokera ??$ per eye
nightime gel - ~$10 for a tube which lasts a couple months
preservative free drops - Approximately $0.50 - $1 per doplet!!

The thing which has helped most is the nighttime ointment. You can get this Systane, Genteal, or other ones. They are all basically the same, just petroleum jelly mixed with mineral oil. I put this on 2-3 times per day. It is slightly uncomfortable for a minute but it stays in your eye without evaporating like the water based drops do. I still wish I had my old teenager eyes back - I am still to young to be saying things like that.

Chronic prostatitis
I have not found a solution to this awful problem. The only thing which has helped is to stop drinking caffeine, which was very difficult. Caffeine is what got me through college and grad school.
I have tried some hip exercises shown on Youtube but with little help.
At least you save $5 per day not drinking coffee.

Dry skin/lips/eczema
I usually just put some mentholatum or chap stick on my lips. I just live with the dry skin. I hate it but I also hate the feeling of lotion on my skin.

Low Testosterone / sexual issues
I have not found any help with this. I have had these problems since age 21-22 about the same time as the prostatitis onset.

Gynecomastia
Only fix for this is a $5000 surgery and 4-6 weeks off of work, also having to explain to your boss that you’re taking off work to get your tits removed. I have not pulled the trigger on this yet.

Depression
No fix yet. Vitamin D3 helps, I listen to Rhonda Patrick and she recommends 4000 IU per day. I usually do 2000-4000 but I don’t always remember to take it. I usually feel better when using it but it doesn’t help with the self esteem issues. I also noticed one time that St Johns Wort did improve my mood, but other times I tried it with no effect. I want to get rid of my glasses but I can’t because of the dry eye.

Hip Impingement
Also, only fix for this is an expensive surgery. And it is not a guaranteed fix. There is considerable debate in the literature as to whether hip arthroscopy actually helps this condition or not.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

I do not have any blood tests other than the testosterone I mentioned.

Anything not listed in the above questions you’d like to share about your experience?

In all, I think accutane attacks pretty much all of the glandular tissue in the body. Sebaceous glands, prostate gland, thyroid, pituitary, lacrimal, testes, you name it it seems like it affects that gland.

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

See above

1 Like

Hi @AccutaneKills, and welcome to the forum - you’re in the right place! This has clearly been a long struggle for you, with a lot of disparate symptoms. I hope you will keep checking in and update everyone on how you’re doing in this thread.

If you haven’t already, check out the recent announcement about a patient-initiated study we’re fundraising for - Out of the wilderness: New scientific research and major awareness campaign .

Dry skin,eczama,prostatitis,less tears totally same as me and I am pfs sufferer.

Do you have scalp itching and like hair follicle inflammation/folliculitus ?

Hello, yes I do have itchy scalp. Cold weather makes it worse.

BTW: Sorry I tried to fill out the survey for the initial post but it said if I waited until after I could check the boxes but that didnt happen