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 (country)?
Norway
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?)
Found it via acne.org forum: https://www.acne.org/messageboard/topic/295030-repairing-the-long-term-damage-from-accutane/?page=643
What is your current age, height, weight?
29 years old, 1.86m high, 75kg
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.)?
Don’t remember, but I believe it was a standard dosage for 6 months
What condition was being treated with the drug?
acne
For how long did you take the drug (weeks/months/years)?
6 months approx.
How old were you, and WHEN (date) did you start the drug?
I was 19 years old, started in august 2008
How old were you when you quit, and WHEN (date) did you quit?
19 years old, January 2009
How did you quit (cold turkey or taper off)?
cold turkey
How long into your usage did you notice the onset of side effects?
3-4 months approx.
What side effects did you experience that have yet to resolve since discontinuation?
Fatigue, brain fog, pressure in head, rosacea, nail fungus, heart palpilations, sleep problems, post-exertional malaise. constantly cold, ibs etc.
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
[ ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[x] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[x] Confusion
[x] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[ ] 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
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[x] Muscle Weakness
[ ] Joint Pain
[x] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[x] Persistent Fatigue / Exhaustion
[x] Stomach Pains / Digestion Problems
[x] Constipation / “Poo Pellets”
[x] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[x] Hearing loss
[ ] Increased hair loss
[x] Frequent urination
[ ] Lowered body temperature
[ ] Other (please explain)
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Tried mane treatments for ME/CFS as I was diagnosed with this after using accutane (Rituximab, antibiotics, herbal therapies, metabolic supplements, etc)
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)?
Not sure which tests that show hormonal changes. But basically most normal blood tests are fine. Some low WBC count
Anything not listed in the above questions you’d like to share about your experience?
not that I can think of now
Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
Took accutane for acne. Developed some rosacea like rash (later diagnosed as rocacea) early in the treatment. Didn’t really notice any more sideeffects from the treatment until I started exercising again after the end of treatment (didn’t exercise while on treatment because of a new job). Then all hell broke loose. Before accutane I was very fit. Exercised over around seven times a week. But first time exercising after accutane I felt extremely ill. Pulse wouldn’t calm down, stayed over 100 for over 24 hours. Previously I would reach resting pulse within one around after excercising. Felt dizzy, naucea, and had some problems balancing. These accute symptons lastet for a couple of days, but after that pressure in the head startet building up. From that point it all went slowly downwards, until I developed ME/CFS. The usual ME/CFS symptoms as describe above developed over the next year, and my health became really bad and has basically been the same since. One course of antibiotic (avelox) 1-2 years into the disease got me from around 30% to 70 % functioning, but my health has unfortunately since detoriated back to around 30-40%.