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)?
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?)
What is your current age, height, weight?
19, 6’2, 143lb
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Accutane (Clavaris and Zenatane)
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
60mg a day
What condition was being treated with the drug?
For how long did you take the drug (weeks/months/years)?
How old were you, and WHEN (date) did you start the drug?
18 years old, March 2020- July 2020
How old were you when you quit, and WHEN (date) did you quit?
How did you quit (cold turkey or taper off)?
Tapered off over a span of 1 week
How long into your usage did you notice the onset of side effects?
What side effects did you experience that have yet to resolve since discontinuation?
Rapid hairloss with itchy scalp
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.
Loss of Libido / Sex Drive
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility
Emotional Blunting / Emotionally Flat
Difficulty Focusing / Concentrating
Memory Loss / Forgetfulness
Stumbling over Words / Losing Train of Thought
Slurring of Speech
Lack of Motivation / Feeling Passive / Complacency
Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Gynecomastia (male breasts)
Dry / Dark Circles under eyes
Persistent Fatigue / Exhaustion
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Increased hair loss
Lowered body temperature
Other (please explain)
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Liver detox, tofacitinib (ongoing)
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.
Got prescribed accutane and took it for 4 months. I had very mild acne. On the fourth month, my hair began rapidly falling out, also with an intense scalp itch. For the past 4 or so months, I have been losing 200 hairs a day, sometimes more. My hairline has not moved back at all.
At first I thought it was Telogen Effluvium but the side effects don’t add up. My hair falls in a very abrupt manner and the HAIRS themselves seem to be much thinner than normal. Also, my hair has went from needle-like straight to curly. Alot of close family members/friends have asked if I have gotten a perm to give you a sense of how curly my hair now is.
Upon using a microscopic camera on my scalp and hairs, I seem to have a condition called “pili torti”. This is where the hair shafts twist and turn. It’s usually a sign of autoimmune hairloss. Going off this idea, I have purchased and begun using Tofacitinib, an immunesuppressor. I am almost 2 months on this medicaiton. I’ll keep everyone updated if it works.
What surprises me is how rapid hairloss with itchy scalp is seen also in PFS people and not only PAS. I am curious as to how/why this occurs.
Here is a close up picture of my scalp, you can see I’ve lost 80% of my scalp hair. Keep in mind I’ve been shedding for 4 months.
I’d like to get in touch with anyone, whether they be PAS or PFS, who also have/had an itchy scalp with hairloss. I’m near positive autoimmunity is playing a factor in this and I’m excited to see if the immuno suppressor I’m on will clear things up.
I’d also like to say I’m looking into the possibility that the hairloss I have is Lichen Planopilaris