Xeljanz (Tofacitinib Citrate): My experience on the trial

I have received a lot of interest from others on here in my involvement with the Xeljanz trials at Yale.

I thought it would be nice for everyone if I documented my progress on here. 

Xeljanz is a Jak3 inhibitor and is believed to work with alopecia by turning off the distress signal relayed by the hair follicle to the attacking immune system which is the cause of the hairs falling out. Xeljanz comes in a strength of 5mg per pill and a full box contains 60 tablets. The recommended dosage for arthritis is 1 tablet in the morning and another in the evening each day.

The trial is set in a series of stages and there are requirements before participating. These include monthly visits and blood tests every 2 weeks. Dr Brett King is absolutely fantastic and is an inspiration to me. His positivity and enthusiasm gives me the much needed hope I have craved for over a decade. I have been put on a low dose to start with which is 1 tablet every other day. My dosage has now been increased to 1 tablet every day and next month it could be increased to 2 tablets per day depending on the results. 

I have completed my first month and have already noticed my alopecia has stabilised . I have not lost any existing hairs. In addition to this I have seen little hairs growing in my chest area as well as eyebrows. Fingers crossed! To date, I have experienced no side effects.

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AW:  Other discussions on Xeljanz / Tofacitinib

https://alopeciaworld.com/main/search/search?q=Tofacitinib

 

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Permalink Reply by Patchesforlife on June 23, 2017 at 1:09pm
Anyone attending NAAF in Miami? Maybe we can be informed of latest..
Permalink Reply by MichaelJ88 on June 25, 2017 at 1:49pm

Hey all just wanted to give an update on my progress as I posted a few weeks ago gathering opinions on taking xeljanz with prednisone and if there was any success in the combination. I am on 11mg xr for 3 months with no signs of regrowth (except my nails) when I started a cycle of prednisone (60mg x 7 days, 40mg x 7, 20 x 7, 10 x 7). Around a week ago (3 weeks in with the prednisone), I noticed some vellus hairs on my head and face. Now a week later and there are more vellus hairs and a few dark hairs as well. It looks like my hair on my head is continuing to grow and my hope is it continues once the prednisone is out of my system - only time will tell. The idea is to abruptly lower your immune system with the prednisone to allow the xeljanz to work. The theory is playing out so far but is very early in the game. I am most likely going to go on a higher dosage of xeljanz if the regrowth stops.

Combining the two drugs can be daunting and have somewhat intense side effects, so proceed with caution if this is something anyone wants to entertain. For me eating very healthy and exercising a great deal keeps the side effects at bay as I have taken prednisone many times in the last few years. Hope everyone is having a great day!

Permalink Reply by Patchesforlife on June 26, 2017 at 10:47am
Hi Mike. What sideeffects to prednisone have? Thank you
Permalink Reply by Rascalx2 on June 26, 2017 at 11:36am
Anyone here try humara, another RA drug? Or any of the other RA drugs? Since it is thought to be the same pathway as alopecia (auto immune) was wondering if anyone had RA and alopecia which was helping both?
Permalink Reply by Suzie on June 26, 2017 at 12:36pm

I was on Humira for my RA years ago BEFORE I had my 2nd case of AA.  It helped my RA tremendously....had to stop taking it because it stopped working for my RA

I tried to do an all natural for my RA only to find I was in extreme pain with joint pain EVERYWHERE.  So then my Rheumatologist recommended me trying Orencia.  It worked so great that I began to work out again.  I've been on biologics for so long that I decided to give it a rest after about 8 months of being on Orencia.....then I guess, my system went haywire and I started to lose my hair.  My rheumatologist told me to go back on the Orencia and that it had NOTHING to do with the AA, so I did for a few months only to still have my hair shed.  I did research on Orencia and this has happened to some people as with Enbrel and Humira as well.  I was never aware of that.  Some people on this site have also said they lost all of their hair being on these biologics which is so confusing as I thought it was to help auto immune diseases.

I saw a dermatologist who began steroid injections and some of the patches filled in, but I started to get more and more and eventually she said there was nothing else she could do.

I then came across this Alopecia site and did research on Xeljanz, so I asked my Rheumatologist to start me on that to help both the RA and AA.  My hair slowly started coming in BEFORE I started the Xeljanz, but after 6 months of being on it my patches have all filled in.  It's going to take a long time before the thickness returns, but I'm happy with the progress I've made.

Hope this helps..... 

Permalink Reply by Rascalx2 on June 27, 2017 at 6:39am
I also have ulcerative colitis for about 20 years, was on an immunsuppressant for long time, I stopped taking it and about 3 months later all hair fell out within 8 days. Mercaptopurine was the drug and causes hair loss, however hair loss Is a side effect, wonder if it was suppressing alopecia. I never had hair loss while on the drug.
Permalink Reply by SarahJean on June 26, 2017 at 5:50pm

I've been on Enbrel, Humira and Simponi, prednisone, methotrexate and cyclosporine. All arthritis drugs, and in my personal experience none of these helped significantly with my AA. While all of these target the immune system, Xeljanz and Jakafi target new pathways which makes them such a big deal.

   *ALSO* The FDA has a PDUFA date for Xeljanz for psoriatic arthritis for anyone following this thread who might have AA and psoriatic arthritis like me... looks like it may be a good Xmas this year!

Permalink Reply by MichaelJ88 on June 26, 2017 at 10:03pm

Hey Patches. Everyone is different but the side effects for me were elevated heart rate, irritability, restlessness, and sometimes some nausea. I was a pain to be around.. just ask my ex girlfriend haha. This is the fourth of fifth time in the last couple years I have taken prednisone but this time the side effects were surprisingly mild. I've always worked out but I upped my exercise regimen (and diet) and it seemed to really help with the side effects.

Permalink Reply by Jcortez05 on June 26, 2017 at 1:10pm
Update ..just over 10 months since I shaved it off because it was thinning so badly .
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Permalink Reply by Suzie on June 26, 2017 at 1:48pm

Fantastic growth Jcortez05!  So happy for you!!!!  Hope it continues!

Permalink Reply by Football fan on June 26, 2017 at 2:15pm
Wow are you on two pills a a day
Permalink Reply by Jcortez05 on June 26, 2017 at 2:34pm
No 1 pill the extended release but take it about 3 times a week .. in fact I still have Medicine from last year since I don't take them as I'm suppose to .. but I do have some thinning on my left side .. (after having a severe anxiety episode )

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