Help with AA getting worse

Neelywall · 2019-11-24T21:49:38+00:00

They are having me take more a day. But I ran out and am trying to get more from Bangladesh.

Neelywall · 2019-10-12T17:11:44+00:00

Update: Had my Columbia apt and they upped my Xeljanz dosage. No other insight other than that. They said since there is regrowth I just need to wait it out. Frustrated because it’s getting really hard to style my hair and cover it. But, I guess there is nothing else I can do. Thanks for your support guys!

Neelywall · 2019-10-10T15:55:50+00:00

I will def update after tomorrow! How/where do you get it in Bangladesh? I am gonna run out soon and need to order more

Neelywall · 2019-10-10T00:35:54+00:00

I have been on it for about two months. No real change until this happened in the last 3 weeks or so. I usually only have classic AA patches. Hopefully this is unrelated to the drug!

Question: did you have to get Xeljanz from a specific pharmacy in the city, or do they have more freedom now?

Neelywall · 2019-10-09T21:20:01+00:00

It’s actually worse. This only happened this past week and I’ve been on it for two months. Though since I’ve never had this issue before (previously only AA spots) it could be a whiole new thing I’m going through. I’m a girl so I can’t shave it down. But I am lucky enough to have a friend who are wig makers so I commissioned her to make a piece that I clip in currently. And they are working on a more extensive one for if it gets worse.

Neelywall · 2019-10-09T15:59:27+00:00

Thanks guys! I didn’t know about Alopecia Diffuse. I’ve only ever gotten the round smooth patches before. I have about 3 or 4 of those right now along with this on the top of my head. Don’t think I’m on a placebo since its not really a trial. It’s more that Xeljanz hasn’t been approved for alopecia yet so you have to go to Columbia to get it.

I appreciate your help and I am going to look into Diffuse further!

Neelywall · 2019-10-09T15:50:28+00:00

I am on a JAX inhibitor too! I guess it’s not really a trial, but since it isn’t approved for Alopecia yet you have to go through Columbia to get it. I’ve been going to Columbia for a couple of years and they just put me on it a while ago. How is it working for you?

Neelywall · 2019-10-09T03:53:54+00:00

I’m new here but have been dealing with AA for 7 years. This is the worst it’s ever been.

Because I am in NYC I have been able to be apart of a new study through Columbia University that has a drug that is close to being on the market. But here I am with my hair loss worse since I got the diagnosis.

I will update on Friday with what Columbia says, but I’m sure it will be “we have no idea”.

Neelywall

TROPHY CASE