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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Replies to This Discussion

Permalink Reply by Kathy on March 8, 2018 at 7:37am

Hi Carlie,

Why not try diet again, my doc only treated me this way and it made a huge difference. Didn’t stop it completely but I have a lot more hair now with no dairy, gluten and supplements. I had never heard of Xeljanz until this group. Did your research show negative side effects?

Permalink Reply by Carlie on March 8, 2018 at 1:03pm

I think I need to talk to my doctor more about it. It's an immunosuppressant, so it basically block the immune system from functioning. Since my immune system is so screwed up anyway that doesn't worry me. It's the damage it can do to the liver that I worry about. I will check out how RA patients are doing after long term use. RA is so disabling, it would be worth taking it to be able to live pain free.

Kathy, did you have AA, Au,or AT? How long before you saw the results with diet?

Permalink Reply by SarahJean on March 8, 2018 at 4:57pm

I have arthritis which is the reason I've been on the immunosuppressants for so long. My doc checks my bloodwork regularly to make sure my liver etc are fine, and tuberculosis tests as well. 17 yrs so far so good, and I've been on methotrexate, cyclosporine, bursts of prednisone, enbrel, simponi, humira, and now xeljanz. I seem to tolerate them pretty well but I can't speak for everyone. Your doctor will hopefully inform you that they will monitor your bloodwork closely and give you some peace of mind :)

Permalink Reply by JG on March 12, 2018 at 9:21am

Hi Carlie! I am in my 30s and also in a first year of my AU was ready to try anything. Got many health issues in addition and now just happy to be able to take care of my family. Doing all natural methods and therapies to heal my body and hoping to get hair as a bonus. But there will be always tiny part of me hidden deeply inside that wants hair so badly...

Permalink Reply by Newjack on March 8, 2018 at 6:20pm

I was just approved for xelsource for a year. I feel great. 

Permalink Reply by Frida Rupert on March 8, 2018 at 6:44pm

Woo hoo hairiness here we come! Great news!

Permalink Reply by Newjack on March 9, 2018 at 12:49pm

Thank you guys it was such a relief. 

Permalink Reply by Christopher's_mom on March 8, 2018 at 9:00pm

So happy for you.

Permalink Reply by Frrankie on March 9, 2018 at 12:28pm

Don't give up! Funny I am on xeljanz extended release 11mg pills. I take two a day. I just asked to increase my dose and my doctor said no. I am at the maximum for that prescription.

I really think it is great your doctor is increasing your Xeljanz dose. Please post pictures when you are comfortable. Good luck!

Anyone have any good news on new prescription to treat this issue. During my last text with my doctor she said new stuff will be available soon.  I did not press and can't say what soon is in her medical world.

Permalink Reply by Newjack on March 9, 2018 at 12:48pm

Are you covered for 11mg x2? I'm responding well on my scalp but not my beard. I've only been on Xeljanz for 8 weeks. My hair on my head is like 65% back already. 

I want to increase my dose but unsure how I could go about it

Permalink Reply by Frrankie on March 9, 2018 at 1:02pm

Good to hear. I am responding with facial hair very little scalp hair but some. I have had AU for over 40 years. 

Permalink Reply by Hopemom on March 9, 2018 at 5:49pm

My daughter's dermatologist told her to increase Xeljanz to 10mg twice a day if the hair coverage is less than 50% by 12 weeks. Otherwise stays on 10mg per day. FYI, take care, 

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