Comment by Baldie on December 20, 2017 at 3:25am

As a resident with a greater understanding of the human body than the typical alopecia sufferer, what is the time horizon youre expecting with the JAK inhibitor?  Would you stay on it for years if that's what it took to maintain a durable head of hair (and eyebrows, etc)?  I'm considering the same thing.  I'd jump on Xeljanz in a second if I knew it were a two month cycle or something similar.  But the thought of having a seriously compromised immune system for years is just scary.  Higher infection risk.  Higher cancer risk.  A bunch of other side effects, plus the unknown.  How did you weigh out the pros and cons?

Comment by april on December 23, 2017 at 10:53pm

Everyone has to choose whatever treatment or therapy they feel may help them. I am a Respiratory Therapist in the hospital. I have had Universalis for 6 years now. For me, experimental therapy with side affects are just not worth it. I have become extremely comfortable being a bald woman. I am healthy and see so many people on a daily basis that have life threatening diseases that are heartbreaking. Every person's journey is different. I would love to see more awareness for our disease and maybe someday there will be treatment without so many adverse effects. Just treated myself to the most amazing eyebrow tatoos ever!!

Comment by Jim In Cali on February 7, 2019 at 12:10pm

I was very much like you. Had thick, full hair all my life. Then quickly started losing my hair in clumps. Looked like crop circles in my head. Perfectly round bald spots about the size of a quarter. My hair was long and thick enough to cover up most of the spots. Had Alopecia about 7 years now. Lost all my hair twice, but it comes back when my body calmed down. The only thing that consistently works for my Alopecia is the shots of steroids directly in my scalp. But its like playing whack the mole, would get a shot in a few spots then next 6 weeks new spots would form.

Otezla is darn expensive itself. I was on the Cyclosporine (immune suppression) and every time I took it, even after eating I had an upset stomach, which was 2x a day. Cyclosporine worked great for 6 months, had a full head of hair, not like before Alopecia but still full. Then Alopecia showed who's in charge and my hair started falling out and it never worked again. I was actually happy stopping the Cyclosporine.

Just started Otezla (not with Cyclosporine) for about a 3 weeks now. I am having a little bit of a reaction to it in the form of a rash on my legs, stomach and arms, which is funny because it is a  psoriasis treatment. Benadryl cream seems to work for the rash, hopefully my body adjust to Otezla. 

As with any treatment for Alopecia you have to give it at least 6 weeks before you know if it is effective. How long it takes for the hair follicles to be switched back on and start to grow out of the scalp. When I look back I had a lot of stress when my alopecia started too.

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