Female 25 Years Post Accutane

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (Canada)?

How did you find this forum (Accutane Long Term Side Effects Facebook Group?)

What is your current age, height, weight? Age 44, Hight 5’6", 120 lbs

What specific drug did you use (Accutane)?

What dose did you take (Have no idea and doctor chucked out my records)?

What condition was being treated with the drug? Acne

For how long did you take the drug (weeks/months/years)? Was off and on it 4 times during the space of 5 years

How old were you, and WHEN (date) did you start the drug? About 17

How old were you when you quit, and WHEN (date) did you quit? About 22

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

How long into your usage did you notice the onset of side effects? 17, however I was not warned of any such side effects so had no idea accutane was causing them.

What side effects did you experience that have yet to resolve since discontinuation? NO sex drive and brain feels staticky, depression, anxiety, loss of pleasure, excessive sweating, excessive body hair, yellow skin around face, extremely dry eyes and skin, not happy in life, no relationships. Made me hallucinate when I was on it and for many years afterwards.

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

Mental
[yes] Emotional Blunting / Emotionally Flat
[yes] Difficulty Focusing / Concentrating
[yes] Confusion
[no] Memory Loss / Forgetfulness
[no] Stumbling over Words / Losing Train of Thought
[no] Slurring of Speech
[yes] Lack of Motivation / Feeling Passive / Complacency
[yes] Extreme Anxiety / Panic Attacks
[yes] Severe Depression / Melancholy
[yes] Suicidal Thoughts

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
[no] Weight Gain
Gynecomastia (male breasts)
[no] Muscle Wastage
[yes] Muscle Weakness
[yes, now have it] Joint Pain
[no] Dry / Dark Circles under eyes

Misc
Prostate pain
[yes] Persistent Fatigue / Exhaustion
[no] Stomach Pains / Digestion Problems
[no] Constipation / “Poo Pellets”
[yes] Vision - Acuity Decrease / Blurriness
[yes, staticky noise in ears and slightly flickering vision] Tinnitus (ringing or high pitched sound in ears)
[no] Hearing loss
[yes] Increased hair loss
[no] Frequent urination
[not sure] Lowered body temperature

Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? No one has helped me, many were happy to take my money but no one helped, some made me much worse, such as iron supplements.

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)?

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

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug. Started the drug around age 17, started having severe anxiety and loss of pleasure in life, also my brain felt “staticky”, started to think others knew my thoughts. At age 19 started having severe hallucinations (auditory, visual, tactile, olfactory). The same family doctor that had me on accutane then put me on zoloft. She saw me during her lunch break at the request of my mother and diagnosed me with “psychotic depression”. She put me on zoloft and told me it has no side effects. I didn’t want it, I thought I had mental telepathy so didn’t understand how it would help me but I took it anyway. After a week I developed muscle twitches and nightmares. I took myself off the zoloft cold turkey after about 6 weeks. The nightmares persisted for 3 years and the muscle twitches for 8. The doctor still had me off and on accutane. A bishop at church told me I brought this upon myself because apparently I must have sinned and told me if I repented it would go away. He kept talking about satan. After conversing with him I started to think I was possessed and the voices turned into “evil spirits”. The nightmares and muscle twitches were in my mind caused by the “evil spirits” too, was like they were possessing my body and pressing buttons, putting pains into me or making my muscle twitches. I had nothing but nightmares from the time I went to bed until the time I woke up for 3 years.
After years of emotional torture I was diagnosed with schizophrenia and put on olanzapine, which had severe side effects and then I was switched to Seroquel. After 3 years of not getting better and doctors at the hospital using me for their study and not caring about me but rather caring more about the study and making the drugs look like they were helping me, I finally took myself off. Tapered down for a month and felt extremely agitated and unwell but then after 3 days ate a chocolate (must have been the magnesium) and felt back to “normal”. The doctor in charge of me screamed at me when he found out I quit, because it was just shy of the 3 years he needed to study me for his study. I stayed away from doctors and their drugs and listened to alternative health experts beginning with mercola. My brain felt much clearer after getting off the antispychotics but took years to slowly heal. My brain still feels staticky and inflammed and I haven’t felt very happy. Been very depressed and had anxiety and think about ending it all. Feel cranky most days and easily frustrated with little patience. I have no functional sex drive. Do not enjoy sex at all and find it impossible to date or have a relationship. And am very upset at my loss of sexuality. I’ve never really had much of a sex drive most of my life. I spent many years listening to health summits and trying this and that and every supplement I heard of that I thought might help but found very little. I tried fasting for 7 days but I think all that did was stir up the mercury from my fat cells (from having mercury fillings from age 10 until my early 20’s). I have had mid back muscle fatigue for 10 years and low back pain for about 5 years. I figured out my mid back muscle fatigue is tied to not having enough bioavailable copper for my muscles. I also have arthritis in my fingers off and on but do borax and that might be helping. Really the only thing left I feel somewhat hopeful about trying is a stem cell treatment or exosomes. I am 44 years old now.

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Your pain will not be for nothing, friend.
Keep on grasping to light and life.

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Thank you for sharing your story. Mine was similar with Accutane use when I was 17-18 that led to extreme paranoia that friends were trying to poison or kill me when the symptoms became severe. Luckily, that disappeared quickly. I also have a slew of other sexual, neurological, and physical symptoms that appear to be permanent despite multiple tests and treatments.

If you haven’t, please take the time to complete the post-drug syndrome survey. It is very important that we gather as much data on post-Accutane patients as possible in the near future. It will be presented to a drug-safety review board being held by the MHRA in the UK to show a link between Accutane and development of symptoms that are not only often persistent, but have also led to suicide in many.

The admins of this site have also successfully used the survey data to spark scientific interest in studying a multi-substance post-drug syndrome. Whether this interest develops into a study of post-drug patients and eventual treatment is yet to be seen, but we will keep trying until it happens.

what an unfortunate place to get to know each other, i am so sorry to hear what u went/are going through, hope one day we will live the life that we deserve, welcome onboard

@Renny given your long term treatment and back pain have they found any evidence of hyperostosis or extensive degeneration?

Unfortunately when I finally went to a MD for my back she said “go home, maybe if it hurts for 3 more months I might do something…” I never bothered to go back. Do you have this? I also have had some ear pain when sleeping on one side too long and vertigo. I went to my doctor on Monday and in 3 minutes she said once you have vertigo you will always have it and she checked my ears and said everything was fine and all I needed to do was drink more water even though I already drink a lot of water. Time to fire that doctor! On to the next…

Okay, I’m a female though… Is this formum for males? Females can also be devastated by the effects of Accutane and not having a sex drive.

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The forum is 100% for everybody, male or female. We have quite a few female members here. You are very welcome here and thank you for joining.

Please could you fill out the survey @Renny ? It’d be a great help. You need to click the bar graph icon in the top right.

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Yes I have hyperostosis in feet and knees, its where tendon insertions are calcified. I have extensive degeneration/arthritis in spine at all levels, very uncommon for my age.

I’m 43, took 2 courses at 16 high dosage back then.

Basically if doc gets ct scan or x-ray it looks like someone much older. I don’t know why but some females tend to get less sides, maybe it’s estrogens, I just don’t know.

Regarding doctors they people just like us and sometimes if they not sure they guess.

There are other accutane female members here, welcome.

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Hi thanks Pete!, it won’t let me do the survey, I get error message unfortunately