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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 EP on
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Hi! I'm a 7-year alopecia totalis sufferer lookin for some Xeljanz knowledge. So I know that this has likely been discussed at length in this thread, but I am trying to go through all of the old discussions and getting lost.
Essentially, my question is tri-fold...how the heck is everyone affording this?!?! Even with my insurance the drug would cost nearly 2k per month...if you get onto a hardship program that ends and quit taking the drug, then you lose all of your hair (or so I'm hearing), so how is everyone:
A. Being prescribed this drug for alopecia when it has not been approved as a treatment
B. Paying for it
C. Staying on it when you can't afford it
Thanks in advance, guys! Anxiously awaiting responses :)
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Permalink Reply by strawberry on
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Hi EP, I don't take Xeljanz yet since I'm waiting on doctor's appointments but you can go here:
http://www.alopeciaworld.com/forum/topics/xeljanz-income-concerns-c...
Step one: Call Xelsource and get them to send you the forms to apply
Step two: Find a doctor that's willing to prescribe Xeljanz
Step three: Get your primary doctor/derm to write a referral for you to see the new derm that'll give you Xeljanz
Step four: Have the new derm fill out the forms and send back to Xelsource - they will do a background check using stuff like your 1040 to see if you qualify. Don't worry that your income is too high or anything because if you have bills showing that you cannot afford it, they'll likely accept you from what they told me. This process will take around 2 weeks.
After that, unfortunately, I'm not really sure.. I think you need to have your insurance accept/reject coverage and then you'll receive the Xeljanz bottles or something. Hopes this helps somewhat.
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I haven't mailed off the forms yet (I'm still on step three until late October :p) but from what I've read, it doesn't matter if you put down alopecia/off label or RA. Xelsource will still give it out for a lower cost or for free if you qualify. (If I'm wrong though, someone please correct me! x_x)
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Permalink Reply by Jcortez05 on
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Yes what strawberry said is correct I get it through zelsourse now .. I didn't have to submit a letter of rejection though .. They personally called my insurance and was told they wouldn't cover and the following day zelsourse told me I was approved . It is for off label .
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Permalink Reply by Xeljanzmiracle on
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Do everything Strawberry says. But to qualify for Hardship Program you need to submit proof (a letter) that your insurance REJECTED payment. Then, if you qualify, Xelsource will send you a letter letting you know you were accepted into the Hardship Program and you need to schedule a delivery date for your Xeljanz. You have to schedule a delivery date each month. When you call they ask you if you want to listen to side effects info (they mail a copy every month with the medicine so I always say no.) They also ask you if there have been any changes since the previous month. That's it. I just qualified for my second year of Xeljanz. I have complete regrowth, except under my arms and that's fine with me lol!
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Thank you all for your responses!!!! VERY HELPFUL! I'll let you guys know how it goes :)
I do have a question about side effects, though...has anybody experienced any bad side effects? Do you know anyone who has gotten the REALLY bad ones (ie. Malignant Lymphoma)...the side effects listed are a little unsettling, and I don't necessarily want to overlook them because I'm desperate to regrow my hair...
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Nope, no one on this forum in 2 years
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Just for information everyone, I am just back from Marmaris, Turkey, where I purchased 6 boxes of Xeljanz (56 tablets per box) for 1800 Lira a box (approx £460 a box), it took a day to get them in and the pharmacist showed me the computer and the set price for the Xeljanz. They also advised me that the price of the medication is regulated. I also spoke to customs in Turkey at the airport who had no issue with the medication, however you need the tax form filled in by the pharmacist to claim the 8% KDV back apparently. In truth they couldn't have been less helpful in relation to this.
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L460, how much is that in dollars?
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