Dr. King comment on Xeljanz trial to date

I was lucky to get a response from Dr. King regarding an inquiry as to the results of the initial trial for Xeljanz.  I had spoken with him at the onset of the trials which is the only reason I think he responded as he is not taking any more calls or e-mails regarding this subject.  I asked him if he thought the results so far warranted trying the drug as the cost is so high.  His response was as follows:

"The results of the initial group of patients will not be tallied until May.  I can tell you that folks are growing hair, not everybody, but many.  You may want to wait until the results of my trial and the Stanford study (like mine) are known later this year.  That will give your dermatologist guidelines and give you a sense of your likelihood of success so that you can better decide if it is worth the substantial cost." 

I wanted to share this response as I believe the more information we have, the better.  This seems to be the only real hope for many of us with this never-ending condition.  The fact that there are a few people who have not responded is a little disappointing, but without knowing their circumstances, it is hard to make any conclusions.  Any feedback, especially from those who are participating in the trial or currently taking the drug would be helpful.

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Permalink Reply by AlopeciaDestroyedMyLife on January 24, 2015 at 1:08am

hi,

You had no hair at all anywhere other than you're eyelashes and you had these results in 4 months?

Permalink Reply by lara on February 3, 2015 at 2:49pm

hey starshine,

since I read that you have diffuse aa as well and took steroids in the past ,as a newly diagnosed (quite an odyssey to get the right diagnose if you have the diffuse pattern -.-) i would like to know what your opinion on oral steroids is as my dermatologust prescribed them to me and I am at the moment experiencing a major episode, still given the potential side effects and the inefficacy long-term I am hesitant to try...

I would also love to know what doctors have prescribed xeljanz to those taking it (except Dr King of course)

thanks for your reply & best

lara

Permalink Reply by Starshine on February 3, 2015 at 3:44pm
Hi Lara. I did have diffuse AA and did try Prednisone and Methotrexate. I continued taking Methotrexate when I had to stop Prednisone. Sadly, they did not really stop the disease and I have now progressed to AU. Everyone is different though and even though it did not work for me, it might for you. I did not have any side effects and had no problems with the blood work. As for getting Xeljanz, you just have to try different dermatologists until you find one who will prescribe it. The real problem though is getting your insurance to pay for it, as it is very expensive.
Permalink Reply by lara on February 4, 2015 at 9:46am

Thank you for your reply starshine!

Since I am not an American citizen, I do not have an American insurance anyway, and German insurances never pay off-label medications, so I am aware that the payment would be my own problem. As I am going to study in the U.S. this summer, I would have liked to know some dermatologists who are aware of this new treatment and willing to try it, since I do not have time to visit too many doctors during my time in the states and I will have to pay these visits myself as well - altough those costs are obviously peanuts in comparison to the cost of the medication itself...

Permalink Reply by kimberj on January 24, 2015 at 10:04pm

@ AlopeciaDestroyedMyLife

No,  that was the extent of my hair loss at its worst about a year ago. That is when I started on Plaquenil ( Jan 2014 ). I started getting my hair back after 3 months on Plaquenil. However, it was solid white and vet thin with several bald spots remaining. It wasn't until I started the Xeljanz that I started getting fuller, dark hair. The hair growth has more than doubled since adding Xeljanz. See the photos on my profile.

Permalink Reply by AlopeciaDestroyedMyLife on January 26, 2015 at 8:20am

Congrats on the regrowth it looks great.

Very interesting to see that it's grown back white. 

Permalink Reply by Nick Barlulis on January 26, 2015 at 10:10am

Thank you all for the updates! Have any of you taking Xeljanz experienced ANY side effects? I took it for only six weeks before my insurance declined coverage. I didn't notice any regrowth (I have AU) in that short of time. My blood work came back normal and the only side effect was a bit of constipation. Best of luck to everyone! I look forward to trying again if and when I can get help with cost.

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