Thought best to post my isotretinoin situation, another joining the collection.
Where are you from (country)?
UK
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?)
Link from some old friends…
What is your current age, height, weight?
30s, 5’5, 70kg
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Accutane
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
60mg
What condition was being treated with the drug?
Severe acne
For how long did you take the drug (weeks/months/years)?
6 months
How old were you, and WHEN (date) did you start the drug?
17
How old were you when you quit?
18
How did you quit (cold turkey or taper off)?
Cold turkey
How long into your usage did you notice the onset of side effects?
Later period of the course, resulting in ceasing the medication
What side effects did you experience that have yet to resolve since discontinuation?
Put an X beside all that apply:
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
[x] Watery Ejaculate
[ ] Reduced Ejaculate
[Would describe more as loss of orgasmic sensation] Inability or Difficulty to Ejaculate / Orgasm
[Unknown - did not have any tests prior to taking Accutane (was 17)] 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
[x Has resolved in years afterwards] Extreme Anxiety / Panic Attacks
[x Has resolved in years afterwards] Severe Depression / Melancholy
[x Has resolved in years afterwards] Suicidal Thoughts
Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[x] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[x] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[x] Tinnitus (ringing or high pitched sound in ears)
[x] Hearing loss
[x] Increased hair loss
[ ] Frequent urination
[x] Lowered body temperature
[x] Other (please explain)
Reduced sensation from orgasm
Estimate that - at point of ceasing Accutane and continued thereafter - my libido is 5% of what it originally was
“Feminine” pattern of fat distribution on body (buttocks, inner thighs)
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
None - explanation below
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)?
Blood tests have shown normal, including hormonal panels. This is despite the extremely negative, life-altering change in my health, due to this drug. My health, and life, have been profoundly damaged by this drug. Doctors have generally been sympathetic, because I have presented them with published research on the erectile dysfunction side effect. The problem is they do not know the underlying cause. There is a lack of basic science research to show what is happening in Post-Accutane Syndrome.
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.
Took Accutane and experienced extreme side effects at the time. Most prominent side effect was sudden libido loss and erectile dysfunction. Extreme anxiety and depression, neither of which I had until taking Accutane. I didn’t have words in my vocabulary to describe either. Felt like I had entered into a private, burning hell. Large numbers of suicidal thoughts.
Anxiety and depression resolved over time, after ceasing. But the rest of the sexual, physical and mental side effects have persisted ever since.
Deeply want to get a treatment for our shared problem; know that the only way is if we first understand what has happened to us. The symptoms are so starkly similar between Post-Finasteride Syndrome, Post-Accutane Syndrome, and Post-SSRI Syndrome. Besides sites like ours, literature is increasingly associating the three:
E.g.:
- https://www.icf.uab.cat/assets/pdf/productes/bg/es/bg312.18e.pdf
- https://rxisk.org/wp-content/uploads/2015/02/2014-Hogan-SSRIs-and-PSSD.pdf
- https://rxisk.org/enduring-sexual-dysfunction-300-cases/
Big admirer of the PFS guys, who have accomplished so much in their research. But there is still a lot to do. And Accutane users have a big part. We really need more Accutane users here. We need Accutane users’ data for the 23AndMe project. And we will need Post-Accutane Syndrome users for other projects in the near future.
Of profound importance: if we all are working together, in this one place - we can lay the most radical smackdown on our shared problem.
