Alopecia World
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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 Alo-mom on
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Hello, I was not sure that they will give this drug to children. It is not covered by insurance so if you do not apply for financial assistance by Xelsource it could cost $3500 a month.
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Permalink Reply by Mashloum on
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If the financial support is the only constraint, then I can manage, but the age experience with this medication is not disclosed although I heard that there are physicians using this as cream by grounding the tab
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Permalink Reply by Xeljanzmiracle on
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Unfortunately,Mashloum, the results for the topical Xeljanz haven't been very good. There is a woman on AW whose youbg daughter has had good success by eating tumeric. The mother makes a tumeric paste and puts it in her daughter's food. Go to the discussions (first main page) and look for that thread. Wishing u and your son the best!
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Permalink Reply by Christopher's_mom on
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My son is 17 years old and the doctors at Northwestern University, Chicago prescribed him the Xeljanz. He is now on week three.He was progressing toward AU which began 5 1/2 months ago.
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Question: is it really necessary to do bloodwork and have you monitored by a doctor that is specialized in Xeljanz? Reason why is that my GP doesn't know this drug yet and is therefore hesitant to co-operate. So, if I get the Xeljanz in Turkey and just follow what you guys are doing, would that be dangerous? From what I can read back in this conversation, is that there haven't been any dangerous side effects registered, right? I just suffer from severe AA, no other AI diseases...Alternatively, I'll have to wait until Xeljanz is avaiable in my country (by 2018).
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Hi Dolly,
This drug us a biological drug, you need to be under a doctor to monitor it it does not suit everyone. Please look up side effects on the Xeljanz site. Some side effects are lethal I have RA and AU and that is why I am on it. if it doesn't suit my RA I will go off it no question of if or but. I would rather wear a wig for the rest of my life than have it cut short by lymphoma or another form of cancer. I hope there is a cure for Alopecia as it is a horrible auto immune disease that makes life difficult. However many other people have worst problems and are in pain chronically. Keep it in perspective. As my allergic said it is one of the" big boys" in drugs, do not treat it lightly.
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Thanks for your reply, Annipanni! I'll think twice and explore other options first.
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Dolly, your GP can still monitor any changes in your blood work. They don't have to be dermatologists or specialize in Xeljanz. They just need to examine your blood work before you start, and periodically (usually every 3 months) check it to see if any discrepancies, or changes, have developed. That's what every doctor should be capable of doing whether we are on Xeljanz or not. I was the FIRST Xeljanz patient my dermatologists had and when my cholesterol went up, my derm lowered my doseage from 3 back to 2 pills a day and sent me to my GP for treatment. I also decided to drastically change my diet. So what's important is that SOME doctor was monitoring my blood work and caught that.
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I am going to get my doctor to do blood work prior to starting the treatment and check my blood etc in order to get a baseline. Any movement from the "norm" can then be red flagged. Miracle , are you aware of any real threat of lymphoma or any other cancer issues with the use of this drug that is mentioned by annipanni ?
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Hello,
Very encouraged by reading all the comments and progress being made with Xeljanz. I am 27 years ols have been suffering with alopecia areata and have never been able to grow facial, arm, chest, back and leg hair (few hairs here & there on arms & legs) Over the last few years I have also started to loose hair around the crown & sides which is getting really frustrating now.
I tried prednisone for a month, started with 50 mg/day/per week and tapered off by 10 mg each week. I had no success with new growth. however, the hairloss had stopped while on prednisone, but saw a significant hair fall after stopping prednisone which made things even worse. I got really pissed because I had asked doctor if I would loose hair after stopping the meds and she said no, but the reality is that I did and I lost more hair then I ever did. So please be careful and think twice before getting on prednisone.
BTW - I am able to grow some mustache but the growth is very minimal and patchy.
I have recently started taking Xeljanz 5mg twice a day and I am looking forward to the months to come and hope to make some progress. Will keep this team posted on the progress.
Thanks,
Rahul
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Welcome Rahul!
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