Unsure what to do.
I’ve had acne since around age 16. It initially started as mainly whiteheads, then progressed to more inflamed papules/pustules, and now over the last few years I’ve been getting recurrent deep nodules/cysts (roughly 2 every 1–2 weeks which are very inflamed and last atleast 3 weeks before going down). The main issue is that they are leaving permanent atrophic scars and are extremely painful. I also have acne on shoulders and back.
Before isotretinoin I had already tried:
Salicylic acid face wash
- Benzoyl peroxide
- Tretinoin
- Adapalene
- Oral antibiotics combined with topicals
(,currently having to use adapalene and benzoyl peroxide think layers to minimise lesions as much as possible
None controlled the nodular acne , which is why I eventually went on isotretinoin last year.
My skin is extremely oily normally — within about an hour after showering my face becomes very oily again. Accutane was the only thing which controlled my oil.
The accutane worked amazingly well for the acne/oil initially. I started on 10 mg daily with a plan of:
- 10 mg for 6 weeks
- then 20 mg for 6 weeks
- then 30 mg for 6 weeks
Even on 10 mg my skin cleared significantly with basically no dryness except severe dry mouth/thirst.
However, within the first 2 weeks I noticed unusual hair shedding in the shower. Before this I had extremely thick wavy hair and never really noticed shedding. Over the following weeks it rapidly increased to around 300–400 hairs/day, with handfuls coming out on shower days.
I then increased to 20 mg, but around weeks 9–10 I developed very severe insomnia very suddenly. I was physically exhausted but my brain would not switch off at all. I was sleeping maybe 1–2 hours/night maximum, and some nights not at all. I had never experienced anything like this before. The hair shedding also became much worse at this stage.
At the same time, my oil production also started rebounding despite still being on 20 mg, which made me worry the planned cumulative dose wouldn’t even be enough long term.
Because the insomnia became physically unbearable, I stopped the isotretinoin. Within about a week my sleep completely returned to normal.
Unfortunately the hair shedding has continued ever since stopping. It has now been about a year and I still shed roughly 150–200 hairs/day, including pubic hair. No hair loss runs in the family snd all hairs seem to have a white bulb attached. It feels like chronic telogen effluvium, though now on one side of my hairline it’s definitely decreased a lot inhair- but generally it’s pretty diffuse shedding.
Bloods:
- Vitamin D normal
- B12 normal
- Ferritin normal
Luckily my baseline density was very thick, but the shedding still continues daily.
The difficult part is that since stopping isotretinoin, my oil production fully returned and the nodular acne/scarring also returned. I’ve now had another year of ongoing deep scarring acne despite exhausting other options.
I honestly feel isotretinoin was the only thing that actually controlled the acne, but even very low doses seemed to trigger severe shedding and the insomnia at week 9-10 was extreme- first 7-8 weeks had 0 sleep troubles at all that I noticed.
I was wondering if anyone’s been in similar scenario and what they did as it seems if I don’t go back on accutane the scarring is spreading through t my face weekly from the nodules yet I’m unsure how I could go back on a meaningful enough dose to control my oil (20mg wasn’t enough clearly as oil came back on that dose despite 10mg working rlly well initially it rebounded ). I’m also unsure what to do with the hair shedding and insomnia as if I went on again to higher doses to fully get rid of the acne for good it would likely cause big problems with these 2 factors.