Where are you from (country)?
United States
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?)
From being on the acne.org forum “Repairing the Long Term Effects of Accutane” and others mentioning it here and there.
What is your current age, height, weight?
Age: 20
Height: 6’ 0"
Weight: 160 lbs
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Accutane (Absorbica generic)
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
70mg/day
What condition was being treated with the drug?
Moderate acne
For how long did you take the drug (weeks/months/years)?
6 weeks
How old were you, and WHEN (date) did you start the drug?
17
Started early August 2015
How old were you when you quit, and WHEN (date) did you quit?
17
Ended mid September 2015
How did you quit (cold turkey or taper off)?
Cold turkey
How long into your usage did you notice the onset of side effects?
Mild side effects (dryness, fatigue) started within a week.
More severe effects (sexual dysfunction, insomnia, etc.) after about month.
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
[*] 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
[x] Confusion
[x] Memory Loss / Forgetfulness
[x] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[x] Extreme Anxiety / Panic Attacks
[x] Severe Depression / Melancholy
[x] 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)
[x] 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
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature
[x] Other (please explain)
-It’s either dry mouth or burning mouth syndrome. I haven’t gone to a doctor to get it checked out, but at times it feels as if i can never quench my thirst and my tongue begins hurting.
-Sugar intolerance
-I USED to have frequent urination for about a year after stopping treatment. It has ceased, but it has always made me wonder what was causing that particular side effect during that time and why it stopped seemingly out of nowhere.
-Can longer eat foods such as avocados and bananas without them eliciting an allergic-like reaction (mild throat swelling/difficulty breathing and bad bloating) even though I ate these foods just fine prior to Accutane.
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Nothing other than OTC supplementing and avoiding certain foods
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)?
Had a blood test on T3/T4 shortly after treatment, and it came back “within range” according to my doctor, but not sure if it was on the low/high end of the spectrum.
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.
Prior to August of 2015, I had been trying to address my facial/back acne for well over a year with the dermatologist I had been seeing at the time. My dermatologist was always on the “aggressive” side of treatment options, and this included her suggesting Accutane on the first appointment I had with her. I had declined at the time and agreed to take the antibiotic route (tetracycline and later Bactrim) alongside the use of multiple topicals.
After not too much long-term success, she suggested Accutane again, and even though I initially declined again, she went on a spiel about how I was “running out of options” which, at the time, just made me frustrated and lose my ability to stand my ground on why I had logically wanted to avoid Accutane. After that incident, I was on the Absorbica generic within a week, and despite still being super hesitant for my first dose and every dose after, I somehow managed to make myself believe that things would be okay. This obviously wouldn’t be the case!
All the side effects I have listed above appeared over the course of 6 weeks being on the drug, but the one that caused me to put my foot down and led to me stopping my course was the development of double vision and not being able to visually focus on things. Thankfully this side effect subsided within a few days.
When I first stopped the drug, I believed that things would slowly go back to normal, but days of little to no improvement turned to weeks, and weeks to months, and so on. I went through a roller-coaster of emotions during my first year of dealing with these long term side effects, but after nearly 3 years of dealing with this, I’m much better at dealing with the daily struggles these problems present to me.
Currently, I am trying to learn about the things I can do to become an active contributor to helping solve this problem, and I am excited to discover the potential solutions that we, as a community, will hopefully be able to find in the future!