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 nzahir on July 1, 2019 at 11:48pm

I started taking 10 mg a day on the beginning of March and I still have yet to see any regrowth.

Shouldn't I start to see some growth now or very soon? Should I contact my derm to see if we should possibly increase? I am a bit worried though due to some concerns about taking too much Xeljanz. Also my derm has said she hasn't seen a real difference between 10 and 15 mg 

Permalink Reply by Carlie on July 4, 2019 at 1:59am

It didn't even bother increasing from 10 to 15, I went straight to 20. 

Permalink Reply by Rascalx2 on July 4, 2019 at 9:00am

I had nothing until i went to 20 mgs, and a shot of steroids, this was something that showed results, im now on 15 mgs a day and still ok, i had some shedding when i initially decresased. Down to 15 but not shedding, after some time on 15 im going to try and decresase evn another 5 mgs so im only taking 10... because of money and long term effects.. 

Permalink Reply by Nat on July 2, 2019 at 6:13am

Hi Nzahir,

Try 15mg and steroid pulsing. Most people on this site including me are taking 15 or 20 mg.  Also, most dermatologist don't have enough experience with AU. 

Permalink Reply by Carlie on July 4, 2019 at 2:00am

This is true, my derms didn't know what to do and when I kept asking for xeljanz, they finally referred me to someone who knew what it was. That took more than a year!

Permalink Reply by nzahir on July 9, 2019 at 4:26am

Depends which derm, mine deals mostly with alopecia and prescribed me Xeljanz. They helped me go through Pfizer Assistance Program and obtain it for free.

But how do you guys who quickly went to 15mg or started there know if 10 mg wouldn't have worked just fine? My derm says she doesn't see a big difference in 10 or 15 mg. But 15mg a day has also shown more sever side effects.

I am at over 4 months and I don't see any growth yet besides I think I see tiny bit on eyelashes that I hadn't realized until a week or so ago and very little on eyelash, but just like a few on each side that werent there before. Not sure if this means anything is starting or what. Going to derm in like a month and a half 

Permalink Reply by alopecia_exist_so_god_doesnt on July 2, 2019 at 7:07am

i wud suggest instead of increasing dose to 15  try cutting out inflmatory foods and add a good pro biotic..first test it by making curd using it ...70% immune system is in gut yet people say to me diet dosesnt matter 

theme of this thread is just up the dose diet hardly matters while truth is its 70% matters. at 10 mg and solid diet u will have not only hair but healthier and slimmer than before with healthy gut.

At 15 there is increased chances of infection and getting sick..i almost died at high dose jak inhabitor( 20 mg ) and went through gruesome pain after geting uti infection  and then typhoid..never been this weak in my whole life , getting two infection back to back .

after u get sick by jak u need to take antibiotic sometimes and ruin gut and immune even more.

i am without filter but my responce is result of my sadness for fellow AA people and their misguided approach towards it...i dont wana hurt anybody but sometimes u need to be blunt...but i wont be posting anymore probably because ppl wana choose easiest path not the best.

ncbi -> 

by G Vighi · 2008 · Cited by 169 · Related articles
Indeed, gut-associated lymphoid tissue (GALT) is the prominent part of mucosal-associated lymphoid tissue (MALT) and represents almost 70% of the entire immune system; moreover, about 80% of plasma cells [mainly immunoglobulin A (IgA)-bearing cells] reside in GALT

one last tip when u get UTI  due to jak weaking ur immune, drink alot of water it will reduce the pain during urination  ,80% ....otherwuse u will know wat real pain is with u swearing  in bathroom never to take jak or take no more than 10 mg

i feel unburdoned as i have poured out my knowledge which i gather in last 3 years with trial and error .

didnt want to hurt anybody but if i did i am really sorry /\

thanks and adios. 

Permalink Reply by Kathy on July 2, 2019 at 1:07pm

Before you go could you steer me toward information on the Omega 3-Omega 6 ratio? I looked around but not really understanding. I know about inflammatory foods but not the ratio part. Are you saying that we should be essentially  plant based diet? I take Nordic Naturals Ultimate Omega  with 2150 mg of Omega 3 daily. Also, I watch my ferritin very closely, have you experimented with that at all?

Kathy

Permalink Reply by Starshine on July 2, 2019 at 3:58pm

Is anyone still getting Xeljanz through the Pfizer Patient Assistance Program, Xelsource?   After five years of getting Xeljanz though my insurance company, they have decided that are no longer going to approve it.  My doctor is appealing, of course, but we all know how that goes.  I checked with Xelsource and I would be eligible, however, I do not know if they have the same restrictions for it being due to alopecia.  I had started getting it through Xelsource five years ago, until my insurance covered it, but I don't know if things have changed.  If anyone has any info about Xelsource, would love to hear.  

Permalink Reply by Devices561 on July 2, 2019 at 4:16pm

Hi,

im not sure about the Xelsource program. I had a question for you about your experience being on Xeljanz for 5 years. What dose are you currently taking? Do you have full regrowth? have you every tried to stop taking the medication?

Permalink Reply by Starshine on July 2, 2019 at 5:09pm

I am currently taking the normal dose of 5mg twice daily.  I was a slow responder initially, and upped my dose to 15 mgs for about 2 years.  I then went back to the normal dose of 10 mgs, which is what I am currently on.  I do have a full head of hair as you can see.  I was universalis when I started in 2014.  I have not tried to reduce the dose lower than 10 mgs. and have never stopped, although I was thinking about reducing, especially now that I may have trouble getting it.     

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Permalink Reply by Devices561 on July 2, 2019 at 5:21pm

Wow. Your hair  amazing! I ask because I have always worried about being on a medication for that long. I also seems that alopecia can go into remission. I wish you luck and please let us know how your journey continues. 

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