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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 DJ88 on
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Hi,
Im hearing this thing is out now and is a bit expensive. Any idea how much it would cost with insurance? Could you find out somehow?
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Permalink Reply by cws on
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It is very difficult to get insurance to cover this as it is not FDA approved for alopecia. It is an off-label approach and is a biologic ($$). Because it is an expensive drug insurance companies are quick to decline coverage until it is an on-label med. With that said, many people will be having to pay for this all on their own and it is expensive. Larger studies will have to be done in order for it to be FDA approved for alopecia. I am not sure how the risk/ benefit fits into the equation for the FDA.
There is also a study on abatacept (Orencia) at Columbia University that has a long-term safety profile and might also hold a lot of promise for this disease. If it shows similar results I foresee that being one of the first meds to be approved for alopecia by the FDA. The whole process feels very slow, but with all the news on the breakthroughs things might now start to move along a little faster. I think if nothing else, they should be getting a cream out for the JAK inhibitor class of drugs.
For the record, I hate insurance companies and I think that if you have a doctor who is willing to prescribe it then it should get covered.
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How long do you think these trials will take? If it's possible by next year?
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I think the trials for tofacitinib (Xeljanz) that are going on right now are only to test for larger future trials. Pfizer is not participating in the Yale study and probably won't take any action to push for FDA approval until it sees some real compelling results. I also don't know enough regarding the risk/benefit thresholds the FDA may have in approving the drug for "just hair". That is what is so frustrating about this disease...the medical industry has not taken it seriously because it is not life threatening or debilitating in a physical sense. But we all know the psychological impact it can have and it deserves every bit as much attention as other autoimmune diseases when it comes to finding a successful treatment.
I think FDA approval for the new use of the these drugs could still be a few years out. Someone else may have more insight into it than I. I just know it's a painfully slow process. But the good news is, is that these are currently FDA approved and do not have to go through all the initial stages for safety profiling...not to mention that they are in production and on the market.
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One thing I would like to add to this is that it is possible the FDA approves this with the current risk/ benefits as they are. I know some of the rheumatoid arthritis drugs are only to be prescribed after a couple other safer options have first been tried. Maybe that same approach could be used here. Something has to happen because there are ZERO meds FDA approved for this condition. It would be nice to see priority movement on these drugs for that reason alone.
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I have a treatment for alopecia if anyone interested to try contact me 00962796825349
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What's your treatment?
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It's a cream . You can contact me whatsapp for more info i had alopecia universalis for 15 years and this is thr only thing worked for me .
I don't make it I just provided for people to try it from a pharmacist in my country
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What's your country code ???
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I honestly feel that too
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