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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 Starshine on
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ADML, I am also curious about the cream. I finally have 90 percent of my hair back, but I think it would be difficult now to apply cream to a mostly covered scalp. I could see it being used for resistant areas, or for those who are just starting, but not to replace the pills.
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Hi Starshine 90 percent that's great I know you were a slow starter.Are you still on 3 xeljanz and 2 plaquenil a day and I forget how long it took for that to kick in.I'm not having much luck I have been on the 3 xeljanz and 2 plaquenil a day now for 5 weeks and not one new hair just don't understand why.I think I'm the last one left on this site with no regrowth.Trying not to get discouraged but wondering when enough is enough.Had all my blood work done so I'm completely healthy.
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Hi Football Fan. The only thing I can think of is maybe you need to kickstart it with 4 or even 5 pills a day. Of course, check with your doctor first. I think that is what Merry did and it finally started for her. You don't have to stay at that dose, just get it started. The cream might also help along with the pills if we can ever get it. My hair was definitely slow, but yes, I have full scalp caverage now. It is a little thin in places, but I am not complaining. Still on 3 a day along with Plaquenil. Try not to be discouraged, I think you just have to find the right dose to get it started.
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Hi starshine.....would you mind posting a before and after pic? Take care!
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Hey Football Fan - I was in the same boat, no reaction to 3 Xeljanz pills per + 400 mg of plaquenil for months. I have been onRuxolitinib for 3 months under Dr King and starting to get some results. I don't look like Chewbacca but shaving once a week, nose hair returning, lots of fluffy scalp hair. I was 100% AU.
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That's great just got back from doctors appointment she's trying to get a trial for Ruxolitnib.Dont think insurance will pay for it and to expensive to pay for it myself would love to try it.I know it has a different pathway than Zeljanz maybe that's part of my problem.Was it hard to get it covered?
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Insurance covered it. It's actually the second time I have been on it. First go round was only 6 weeks - too short a time to see if it would work. CVS set up like a 16 month recurring script and I get it every month. No side affects.
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ADML, do you already know at what concentration the cream would be compounded? I've seen anywhere from 0.6% to 1.5% in the publications. Doing the math, one bottle of Xeljanz can be compounded into only 30 grams of 1% cream. I don't think that would last for a month assuming twice daily application to scalp. What do you think?
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I don't know, but I would guess not for a couple of years. Your best bet is to compound it from tablets for the time being, with obvious limitations. And btw, there are clinical trials getting under way.
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I'm not sure if I tell pharmacist , they can do it .
Please share with me if you know .
Sorry for my English
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Sara, I believe ADML will post the formula soon. I image you would have to work with your doctor and a compounding pharmacy to create the cream. I don't think you can just walk-in into a pharmacy and have them do it, although maybe that's possible where you live. This probably requires a prescription or at least some involvement by your doctor.
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