Xeljanz Users...Let's Stay Connected Here in 2016!

Hi Friends--

I want to thank so many for following my discussion link, "My Stanford trial experience, Part 2 (Xeljanz)" throughout the bulk of 2015. I began participation in the trial in late January, got my first RX for Xeljanz in February, and started to see the first signs of regrowth 3 1/2 months in. After the trial ended, I opted to stay on the drug, and now I am a post-trial patient for the doctors at Stanford. I will continue to fly up there from Los Angeles once every 3 months or so to provide them more data with the hope that maybe the FDA will one day approve Xeljanz for alopecia! As long as my bloodwork remains healthy, I anticipate staying on the drug for the forseeable future. I have had no negative side effects on Xeljanz since I started. If anything, it has calmed down my overactive immune system and possibly helped settle some food sensitivities I had been developing last year.

I am starting this discussion because I really hope those of us who are currently on Xeljanz (or are about to begin) will want to keep tabs on each other. I have read some posts on other links where patients stopped or reduced the drug, and their hair began to quickly fall out. However, I DO know that alopecia can go into remission. It did for me from early 2009 until the end of 2012. Four years of spontaneous remission! With no drugs. I hold onto hope that Xeljanz may help push some of us into remission, allowing us to taper back on the dosage for some time without devastating relapse. Maybe that's not in the cards. In any case, we are the lab rats right now! So, we need to look after each other and share our stories--whether they are good or bad. My attached photo shows me a week ago--12/15/15. I will continue to post more photos as time goes by. Please all do the same. Let's band together in 2016 and get some viable treatments approved for this cruel disorder!

XO
Susan

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Replies to This Discussion

Permalink Reply by Patchylatchy on January 8, 2017 at 8:07am
Its very sad that pfizer isnt working on getting fda approval for alopecians? Are you sure about that?
Permalink Reply by Isaron90 on October 8, 2016 at 7:43am
Hi everyone
I had AU since 14 years ago
I started to use xeljanz on 17 September 2016 ( now I completed 3 weeks )
My blood work came normal after 2 weeks of used of Xeljanz
And idn't noticed any side affect .
But I would to ask you xeljanz from turkey is the same .
And have the same affect .
Permalink Reply by Suzie on October 12, 2016 at 12:03pm

I will be starting Xeljanz soon and was wondering if anyone that is currently on it also takes the steroid injections for the bald patches as well.  Not sure if the injections will interfere with the medication.  My RA doctor prescribed the Xeljanz so he does not know the affects of it for AA.

Permalink Reply by Isaron90 on October 12, 2016 at 12:07pm
If you read about xeljanz and the other drug interaction
Major interaction with xeljanz is :
Influanza vaccine
Steroids with different type of it " IV - oral or injection "
Amoxicillin
Permalink Reply by Football fan on October 12, 2016 at 1:58pm
you can get a flu shot while on xeljanz it is a dead virus.
Permalink Reply by lindadarnell on October 12, 2016 at 2:12pm

I've been on Xeljanz for almost a year and got a flu shot last week. I was supposed to get a shingles vaccination also but couldn't because of the Xeljanz - you're right, shingles vaccine is live.

Permalink Reply by Jcortez05 on October 12, 2016 at 3:01pm
Has anyone experienced a diff in hair texture with regrowth ? After my hair starting thinning again over the summer I shaved it and it's growing back but feels a lot more course at the top of my scalp ..
Permalink Reply by Deb on October 12, 2016 at 3:24pm

There is alot of mention of Dr King and Dr Ko.  It seems they are the experts with Xeljanz.  How does a person go about getting an apt with these doctors?  

What dosage do they typically start new patients on?  What about the cream made by the compounding pharmacy - is that just once a day?

Permalink Reply by Suzie on October 21, 2016 at 1:18am

Susan have you anything to update us on your clinical trial?

Permalink Reply by Rascalx2 on October 21, 2016 at 12:10pm
Anybody have respiratory issues on xeljanz? I have a cough and can become weezy, my MD gave me inhaler which has helped, said I had lung capacity of 75 yr old after performing breathing spirometry? Im 46, and normally would score 20-30 yr old. So, MD said stay on inhaler, see what happens. I think its side effects of xeljanz. Im at 3 1/2 month mark, dont want to stop taking it, but it feels crazy to take med(inhaler) to counteract xeljanz effects. Its not a cold, It may be allergies although I have never had allergies..,any thoughts ?
Permalink Reply by Jcortez05 on October 21, 2016 at 12:32pm
No respiratory issues .. actually not even a cold .. my son and fiancé have both gotten sick and I still haven't .
Permalink Reply by strawberry on October 21, 2016 at 7:12pm

I saw one person on Instagram mention that she had a respiratory infection for one whole month on Xeljanz. It's in one of her posts but I forgot which: https://www.instagram.com/thealopeciaexperiment/

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