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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 Christopher's_mom on
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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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Thank you for this suggestion of the Xeljaz Co-Pay Savings Card! Do you go through the Pfizer Website or is there a link to where you went to get it?
Yes, we are working on an appeal through Pfizer Customer support as Blue Shield of California has denied our appeal even after the Peer-to Peer review with our son's doctor. We are now also filing Grievance with Blue Shield which will take some time as well and may even take it to the Insurance Commissioner if necessary.
There is legislation in California which does not allow for insurance companies to deny off-label use of an FDA approved drug for other treatments than the intended use so hopefully that will get us some traction too. Anything similar to that in Illinois?
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I just Googled "Xeljanz co-pay card" and was taken to ra.xeljanz.com. From there, there is a "register now" button to click on at the bottom of the page. Once your card arrives in the mail with a welcome kit you activate the card. If my memory is correct I wrote that my son was 18 on the application. Best of luck. It is unconscionable that a human being would deny the opportunity for a boy to have hair. Hair. I never thought I would pray to God for hair...and the opportunity for my son to live the life of an ordinary 17 year old boy.
I do hope this works for you and your son. My son has his life back since going to college. Nobody knows him without hair and it is a fresh start. I feel like the boy I knew has returned. I am so thankful and so hopeful for you and your son.
I don't know of Illinois law. I just know we paid nearly $4000 out of pocket per month for two months and used the first of three free trials on the Xeljanz card before the approval came through.
Your doctor should be re-appealing. Mine said it is customary to have to jump through all the hoops before approval.He predicted he would have to appeal again.
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