"Go to https://www.clinicaltrials.gov
Search for a trial for alopecia near you...i was 'totalis' as well and have suffered for around 20 years."
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Chi_Loss
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- Chicago, IL
- United States
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"i did one and had 95% regrowth. I think its worth it..."
"you might try dr. maria kolesnichenko at northwestern. she has also participated in many of the drug trials. super nice and very knowledgeable. there is quite a waiting list but she is worth it."
"i had pretty decent growth (around 70% from 20%), then it began to fall out again. I was never able to get my insurance to ok an increase in dosage so once it started falling out I decided to just bail and cut it all off until I found the…"
"i took it for around 15 months at 10mg per day"
"no side effects at all. i did see on another thread that someone in the study had elevated potassium levels.."
"i did the study in indy (3 hours away) and they paused for a month or so but re-upped at end of May with lots of precautions. but this place does only derm clinical trials so no competing trials to prioritize. I'm hoping OH is good. I heard…"
"i was started the trial on 8/2018. now am on the extension study until it comes to market. i was semi responsive to xeljanz and have 95% regrowth now. I had aa (which moved to AT) for about 20 years. no side effects. Ophiasis pattern loss."
"Hi! I just found this group and can relate to all comments here. i have been on alopecia world for a while, but the stubborness of the ophiasis pattern (AA to AT) has always been pointed out to me by my derms. i was on xeljanz, but became non…"
"i understand exactly how you feel. and I especially remember how it felt when I had my first really bad episode. The good news is that they are understanding this disease more and more and I expect there will be a new drug on the market in the next…"
"Hi! I am on the dosage trial for the drug mentioned in the link above CTP-543. I was totalis. I started in august 2018 getting 24g/day. I have 95% regrowth. I have had alopecia on and off for about 20 years. One of the nurses said my growth…"
"no. i haven't had any potassium elevations. are you fasted for your blood work? (i am not)"
"It took me about 10 weeks to see vellus (that felt like FOREVER) then it slowly darkened and lengthened. Its like watching a pot of water boil...but it does seem to come in steadily once it darkens up. I also had continued shedding when i started,…"
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- Alopecia areata
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