The Allegory of Alopecia Areata
Hello friends,
This is my first ever Reddit post.
I found my first spot Feb 24. I had noticed immense shedding for a couple weeks. My beautiful long hairs were suddenly all over the place. The back of my head had also been mildly itchy (nothing to write home about). It was 1am and I halfheartedly asked my SO “can you check if I have a bald spot?” He was silent for seemed what eternity and then history was made.
Luckily, I saw my GP that same day and had all bloodwork done. Everything is completely normal. I am 35. No children. Nothing abnormal. Healthy my whole life. I take no medications for anything. Stress is determined to be cause. How absurd. I got in with a derm the next day.
Now, 3 months later, I have 7 spots. One gigantic one on the back of my head, the OG (absolutely huge, she is) and 6 more “traditional” or coin sized ones (coins ranging from dimes to half dollars). After scalp injections, my derm has sent me on my Olumiant journey. First 2mg for a month. Now, 4mg. He also has me on an oral dose of steroids (instead of the scalp injections). One week on, one week off, just to see.
Things have been rather awful. My hair, like most of us, is my crown. It’s so long and thick. I’m actually quite fortunate as you cannot see any of my spots. I either use a powder or some fibers, if I want to. Though, I have decided to purchase a wig, just in case.
I have been reading and most literature says in 3-6 months things tend to start settling. I was almost wondering if it’s because by 3 months, you start to emotionally settle down with no choice but to accept your fate and I’m assuming by 6 months, you can no longer do this mental flagellation. I do not have it in me to cry about my crop circles all the time anymore. They still discourage me and I get frustrated and cranky, but I’m doing everything I can to manage this. Topical, injections, immunosuppressants, vitamins, supplements, I even turned to traditional Chinese acupuncture.
I do see regrowth in the center of The OG. I actually had growth inside her PRIOR to starting the Olumiant. As stated, she is HUGE. Must be 5in in diameter (makes for a nice vent when I start overheating, to be fair).
Anyway, I know there is much uncertainty to AA (one of the worst parts), but —
Has anyone ever been on Olumiant, had hair grow, get everything back on track and then slowly tapered off it without issue?
Is it common for hairs to grow in while hairs are still shedding? I’m not sure how that is making sense. So, the inflammation is stopping in certain places but not others?
Do patches seem to shed and grow for a specific amount of time, would you say? (E.g. you have found patches shed for a month and then seem to stop, or they grow a certain percentage and then stop)
When does the Olumiant (generally) stop the shedding? I’m more concerned with stopping the shedding than I am about the regrowth. My hair is so long and thick, that the growth catching up for it to all be normal again will take eons.
Does anyone’s scalp ever feel a certain way when inflammation is coming down and hair is growing back in? Or any other regrowth signs and feelings you’d like to share?
And lastly, the hairs that are growing in started off as teeny tiny white hairs (vellus), and I thought they’d stay white and get longer, but they’re dark now. Is that strange? I saw so many folks with white hair growth.
Thank you, everyone.
Even though it does not feel like it, everything is going to be ok (at least that is what I keep telling myself).