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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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Replies to This Discussion
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Permalink Reply by Return_life on
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my main problem with X is acne. the more x I took the more it gave me. I reduced my dosage because of acne.
in some cases u can have an eruption and they hurt... I tried a few cream but the only thing that worked I think is TactuPump Forte. it's costly, takes a good 4 weeks to see first sign and u can have severe rash.i stopped using it cause it burns but I don't have acne anymore... whenever I see acne again I a little bit of tactupump and its good
I also cleaned the diet a lot and have veggie juice every day... don't know if it made a difference
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Yep- never had acne before, even in the depth of adolescent hell...so its kind of new for me too. Got a nasty patch on my chin. One benefit of being a lady I can clump on the concealer (boys can too!). I have some retin-a cream from my doc but it only helps marginally. I think as my body adjusts its kind of easing a bit (maybe Im being optimistic?) . Still I'd rather deal with acne and have my hair then have clear bald skin... but i understand for some its a big issue and they'd prefer the clear skin.
I think i get headaches too from X so i think its not a free ride so to speak (Ha- its not a free ride literally as my husband will rave on about...) but no massive change in weight, bloods are good etc). Hopefully if you get some prescription cream it will help a bit. I think I remember reading on this thread that some people even take a oral medication for it but can't seem to find the posts at the mo. Fingers crossed you find a solution.
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My son's dermatologist said Xeljanz causes two types of acne: bacterial and fungal.
My son tried oral antibiotics which weren't helpful so his derm switched him over to what I believe are topicals to treat the fungal form. It seems to have helped. He is an 18 year old boy away at college so I don't know of his compliance but his skin does look better.
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Permalink Reply by DJ88 on
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I never asked this but how exactly does Xeljanz work for Alopecia? It suppress your immune system? Can some one explain exactly what it does?
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Wish I could,when I took chemistry I pretended it was all make believe. It worked for me!
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That is the funniest advice for surviving chemistry ever. And spot-on!
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It basically inhibits (blocks) the signal between the natural killer cells (NK cells) and their messaging to the T cells. The NK cells find the protein in the dermal sheath of the hair and see it as a foreign body to be attacked. These NK cells then call upon the T cells to kill it (this is the part Xeljanz stops). However the stem cells are never damaged in the attack and thus hair can always still grow. The attack just causes inflammation which keeps the hair from growing. This is a rather basic explanation but it paints the picture. This drug is used to laser in on certain immune mechanisms as opposed to carpet-bombing your whole immune system like prednisone does.
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hi All
any new news on when xeljanz be fda approved for alopecia?
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Hi , I am from Dubai, any one can guide me, where i can purchase Xeljanz. How much it cost in USD?
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My 17 year old son has been coping with Alopecia Universalis since the 8th grade. We started him on a 10mg dose of Xeljanz at the beginning of this month. We can't get Blue Shield of California to cover the cost of the drug so its $2,000 per month to continue the use of it. Any suggestions by anyone who has been successful getting the cost covered by insurance?
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My now 18 year old son was diagnosed with AU when he was 17. It is very difficult on teenagers. But I just sent him off to college (after a disastrous senior year of high school) with a full head of hair where he is thriving.Thanks to Xeljanz.
Our insurance, BC/BS of Illinois, now covers his prescription.
Here is what I found:
1) Pfizer has a hardship program where they pay a significant portion of the cost. It doesn't apply to us so we had to go through our insurance company.
2) There is a Xeljanz card that you can apply for online, I believe.The exact name of it is "XELJANZ CO-PAY SAVINGS CARD" They give you three free months a year. Just fill out the form and they send you the card. When you take it to the pharmacy they MUST NOT run it through the insurance company first regardless what the pharmacist believes or thinks.The word "co-pay" on the card confuses them. Just run the card. it works!
3) Your physician should be working on a written appeal right now. Of course the insurance company will deny it.
4) When your son grows hair have the doctor take a picture of it and send it back to the insurance company to reconsider the appeal. Also, have your son submit a brief essay on how this disease impacts his life and have your doctor send that along with the appeal.
They ultimately approved his medicine on a 6 month basis where his physician will need to appeal again as that time approaches.
And I will use the Pfizer Xeljanz card three months/year as well.
Good luck. Please keep us posted as to his progress. The medicine causes acne, too, btw.
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