XELJANZERS! How Many of Us on Xeljanz Now? Where Are You Located?

Yesterday in a Costco parking lot I met my first fellow Xeljanzer (my made-up term) IN PERSON! I saw this pretty bald girl, ran up to her and said "Hey sister" and gave her a hug. We started talking and she told me she has been on Xeljanz for 8 months,and she got it from a local dermatologist, who recommended it to her. She has most of her eyebrows back, but said her hair growth has been erratic and uneven so she purposely still shaves her head. We exchanged phone numbers and plan to keep in touch. It made me wonder if there are any other Xeljanzers, or those that want to get on it, in the San Francisco Bay Area where I live? Alternatively, some of you might want to get together with others in person who live near you. It's one thing to see pictures of hair regrowth, but seeing it first-hand is even better!

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Permalink Reply by Apple on January 7, 2020 at 2:43pm

xeljanz works sister it takes about a year to have full growth of hair, no more shots,  no pills prednisone- that actually makes it worse more hair falls out.

Permalink Reply by Shaina on November 6, 2015 at 11:25pm

I'd like to try it but, in the past, medication has done just awful things to my skin.

If my head has to be bald the skin on it is going to be flawless! :)

Permalink Reply by Xeljanzmiracle on November 7, 2015 at 6:12am
Hi Shaina! I haven't heard of one single person on Xeljanz experiencing any type of rash or irritation on their heads or skin with Xeljanz, but maybe you would be the exception. There's only one way to find out lol!
Permalink Reply by Xeljanz2015 on November 7, 2015 at 6:26pm

I have not experienced any side effects.

Other medicines were terrible and I had to stop because couldn't take the side effects.

Permalink Reply by 2bunnies on November 10, 2015 at 6:16pm

I found that right before I had regrowth my head or legs broke out. It looked like a rash on my legs before I started noticing new growth and on my head it looked like a bunch of tiny pimples. Could that be what happened? 

Permalink Reply by Xeljanz2015 on November 11, 2015 at 9:36am

2bunnies, I didn't experience any of that, but we all react different. Do you wear a wig? I do, and a lot of times I feel very itchy I think because of the amount of hair that has been growing. A few times I see a pimple on my face, but that's it for side effects.

Permalink Reply by 2bunnies on November 11, 2015 at 5:47pm

I do wear a wig but it was different. It was a lot of small pimply looking spots all over my head. I didn't think anything of it as it was the middle of the summer but at the end of September I noticed the same thing on my legs and my husband told me that my head looked like my legs before the hair started growing. 

Permalink Reply by Xeljanz2015 on November 11, 2015 at 6:23pm

I sent you a message 2bunnies!

Permalink Reply by DMC2015 on November 12, 2015 at 11:42am

Hi Everyone.  New to the site.  I live in CT and Dr King is my Derm. I've had Alopecia for 30 years and AU for 15 I was able to do to a trial of Xeljianz through Dr King for 3 months.  During those 3 months, I started to grow hair all over with no side effects.  But my insurance denied it by prescription and when I appealed to Xelsource, I was told I did not financially qualify for hardship.  My husband and I earn just over the limit of the qualification but with a house, 2 teenagers, putting money aside for college for both, etc. there is no way we can afford $2k/month for the medicine - actually unless you make huge oney, I'm not sure who could afford that?!?!  I'm wondering what avenue people went through to get the medication or if they are paying out of pocket.

Permalink Reply by Xeljanz2015 on November 13, 2015 at 5:22pm

Hi DMC2015, Have you tried doing an external review? That's what I did and we got the insurance to cover it now. I still have a very high copay ($1250 for 3 months), but's once I hit my max out of pocket I won't have to pay anymore.

Hope you can get it done too! Where do you live in CT? I'm planning to get together with 2bunnies, maybe you can join us too!

Permalink Reply by DMC2015 on November 16, 2015 at 8:23am

I haven't tried an external review.  I did call the insurance company - Cigna and explained the situation and although she was very nice and supportive, she said Cigna does not cover medication for non-lable use.  Dr. King is hopeful when they approve Xeljanz for psoriasis, alopecia will be next.  I called Xaljanz and asked if there was anything else I could do and they suggested appealing by showing our monthly income and then listing expenses like mortgage, utilities, etc. to show we don't have an extra $2,200 a month for medication.  I plan on working on that this week and faxing it over to them.  Fingers crossed!  I live in Watertown - where is 2 bunnies? Where are you located?

Permalink Reply by Xeljanz2015 on November 18, 2015 at 12:09pm

Hi DMC2015,

Hope you can work things out for Xeljanz! If this step still doesn't work, go for the external review! 

I'm in Norwalk and 2bunnies is very close to me. It's a little far from Watertown. We are planning to meet over the holiday weekend sometime. We could pick a town good for everyone.

I'll be seeing Dr. King in December, so if you can't make it now, I could still meet you up there when I go, but it's weekday, so I'm not sure if you can make it. I'll send you a message. 

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