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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
Replies to This Discussion
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Permalink Reply by lara on
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Regarding treatment under the supervision of Dr King I have a few questions - I 'd be really grateful if someone could answer
-given that you now have to fill out a form before the office contacts you to make an appointment, I have no idea how long I might have to wait for my appointment - how long did it take for you?
- what kind of tests have to be performed in order to obtain a prescription for Xeljanz (e.g. documentation of vaccinations, liver panels ...?)
- is there anyone out there who tried, say, one pill every other day just as ADML did when he started taking Xeljanz - I' m interested in this for the obvious reasons (safety as well as cost) but also because I still have hair at this point but continue to suffer aggressive flare ups which are pretty common in aa diffusa...so I always get a little regrowth which is shortly afterwards diminished and the overall loss is greater than what my body can 'keep' or regrow. My status is obviously quite different from people who have have had totalis for many years, so maybe a different dose might work for me...?
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Those are fantastic questions and one that I would discuss with your Doctor. We are meeting Dr. King in a few weeks and their office wanted to see the latest blood tests before the appointment. We spoke to them recently and they sent us a lab slip for some additional tests. (TB and Quantiferon) We felt it was extremely important to deal with a Doctor who is familiar with these medications. Dr. King just happens to be the leading voice and has a fantastic reputation.
Regarding dosage...again I think that's up to the Doctor. I do know that we scheduled an 8 week follow up visit so he could monitor blood, get feedback, gauge any side effects...then make adjustments accordingly.
I hope this helps...good luck!
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Thanks a lot for your quick response - I wish you the best for the upcoming appointment!
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Hi Lara,
I have just booked an appointment today with him and he had a slot in July - there were no forms to fill out - he promised some information about what test I needed before visiting. All very easy. When I receive them I will post them here.
I am the same as you with AA that re-occurs from time to time with re-growth - the re-growth is usually white hair - I generally have hair all over my head although I shave it short, no upper eye lashes but the rest is generally there but mainly white.
Most people who have posted have had AU and I am wondering what the impact will be for people who get some re-growth with AA - perhaps it might not help, perhaps the opposite. Will be interesting to see. I will be fascinated to see of the white hair becomes dark.
Send me a personal message if you want to know more or we can compare notes here. Many have helped me, especially ADML who has been amazing so keen to try and help others.
ThanksJonathan
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Hummm, thanks a lot for replying, because this is weird indeed. When I phoned the office I was told to send an email to alopeciaareata@ yale (don't remember the address clearly). Anyway, I received an automatic reponse which contained a form which asked for information concerning my disease status, prior medications etc... How did you contact Dr. King then? Via the phone number on his Yale-page as well? Maybe it's because I'm from Europe, but I did find it odd that the questionnare had the Title 'Yale Alopecia Areata Study' ...hope they did not misunderstand me as I simply wanted to book a normal appointment, but I do think my English is good enough to have made myself clear in that regard o.O ...?
My regrowth is baby-fine and very light-pigmented... although I have the diffuse pattern, there are areas which seem to be affected more than others. I have also noticed some white eyebrow-regrowth... I think it was kimberj who first started methotrexate (?) which produced all-white regrowth and then proceeded to grow pigmented hair after adding tofacitinib, you might check out her page.
I agree, this thread is amazing, it really helps me keep going in those moments when everything seems hopeless!
Lara
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HI
Just call his PA Pam +1 203-577-1050.
I am UK based but travel to the States a lot.
Or contact him by email brett.king@yale.edu
hope that helps - soon as I get the reqs. will send through
j
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I called the office again and Pam said that the form was the usual procedure and that after my form has been revised they will contact me to make an appointment...she also said that the earliest available appointments will be in the fall, so I am kind of disappointed right now. When did you make your appointment?
Also, I am still interested in the reqs. once you get them !
Best, lara
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Lara,
We are traveling to Dr. King's office mid June and was able to obtain an appointment by calling Pam at his office. He only works at his office in Middlebury, CT on specific days...so it's just a matter of scheduling. My daughter has been on weekly shots of Methotrexate for 6-7 months and we are getting a variety of growth. From white hairs to terminal...but it's not consistent. Our hope is Xeljanz "kick starts" some of the other hairs...and be able to back off when the desired result is achieve. It truly varies from each individual. Also be sure to ask his office what other blood tests are needed in advance of your first meeting. We have to take a TB test...but be sure to forward your latest tests to rule out other items. Good luck and please keep the group updated. I'm so thankful for all of you and sharing your stories.I am extremely hopeful on the future of treatment. Best of luck!
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Hi everyone this is my first message.Starting my 6th week on xeljanz and not one new hair kind of discouraging after seeing all the great early results.I have about 30 percent of my hair 40 eyebrows 100 eyelashes and 100 nose hairs and was hoping it would kick in quick.I have a really strong immune system never get sick.On the co-pay card now and will have to pay out of pocket in 6 weeks has anyone found the drug cheaper online at 2,800. I will only last a few months unless I see some amazing results soon.Also why haven't we heard any new news on any of the trials it has been nearly a year since all the good news broke?
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As far as I know - only Yale and Stanford have trials going on. In both cases, trials are still in progress. In the Stanford trial I am in - I assume once all of the patients in the trial (we all started at somewhat different times) are done with their three months of xeljanz, and then have their three month follow up - they will be ready to post results. I read somewhere that Dr. King was beginning to compile his findings in May.
I know Stanford is working HARD to find ways to get this approved by insurance. Good luck
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Actually my Doctor said they've (dermatologist) known that immune suppressors grow hair for over 10 years but at a high risk. These are certainly not long term solutions. I am looking at Stem Cell SVF therapy which is promising but at this point no definitive studies. Also the $8,900 cost is scary for a yet unproven therapy.
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