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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 Frida Rupert on
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I think some people can but it's at the risk that your body will once again attack the hair follicles. Some people who trick the body into remission may never have it happen again, others, as soon as the medication that stops the attack is withdrawn they will start losing their hair again. I think, basically, it's a decision that is weighed up by the doctor and the individual, personally if xeljanz works for me (still early days) I will keep taking it for peace of mind. The psychological impact on me of loosing my hair far outweighs the risk associated with taking toficitnib long term. For others this is not the case and no ones approach is wrong, just individualised.
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Frida. I think you will have regrowth just try to be patient. Also I was thinking just like you maybe we can trick our body into remission.
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Thanks for that! It's nice to hear people say that as sometimes you get a bit like - I think it's working but maybe I'm just so hopeful. I've got short growth in scalp with some hairs starting to get a tad longer, my lashes on one eye good, and my body hair is returning sort of (starting to see blonde scattered hairs on my arms). So I think I have to sit tight and remain hopeful. Are you on xeljanz at the moment? Or still researching or waiting for a more affordable option? Hoping that once the patent expires this will become way more accessible for all alopecians.
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i bought one pack from Turkey and only have one pack. I have no doctor that can supervise me so I stopped taking it since im scared. I am hoping the patent expires and/or it becones fda approved and becomes a generic treatment option. The other day I was speaking to ky derm she said she wudnt prescribe it to me because it jeopardizes my whole immune aystem and might cause me cancers etc. Im thinking she just doesn't understand much abt it. I have no clue when itnwill fda approved for alopecia innthe states
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Hi patches, I was told by my derm that jak inhibitors are a new class of drugs and the technology of the medication is to suppress certain pathways and target specific T-cells. So does not suppress the whole immune system hence why people would just use regular immune suppressors. So maybe get a second opinion on that.
I feel it’s jak inhibitors, then stem cells then genome therapy in the way alopecia will eventually get cured.
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thank you so much Singh. God I hope so. Injust hope we dnt reach stem cell and Genome therapy when Im in my 80s!
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singh.. do you envision stem vell therapy to be in near future?
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I think a lot of doctors don't know much about it to be honest. I actually see an immunologist for it as I felt I needed to go to someone who understood complex immune issues He's great but I'm his first patient that he's prescribed it for. Don't think it's any worse then many of the common drugs used for immune disorders- some used long term- like methotrexate. I actually feel healthier on immuno suppressants - methotrexate made me feel great but unfortunately didn't help my hair situation- and I've gotten less viruses and colds since being on xeljanz. It's only subsided here for RA so I have managed to find an overseas source (which needs a script) that's a bit more affordable (still pricey) through family connections. I'm hoping when the patent runs out the price drops quickly so everyone can afford treatment. I think most of the oversight is just liver and kidney blood tests which are pretty standard blood screens. If you have a nice gp he may even be able to do that for you. Gosh I really wish you had more support. It makes me cross when specialists won't allow adults to make choices about their own health and treatment, by doing that they force you to go solo which places you more at risk....
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thank you so much for sharing your experience
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i am here not for my AA. for my daughter vitiligo. researcher found the AA and vitiligo have the same pathway, tofa and ruxo work for both AA and vitiligo, but i could not find people take tofa and ruxo for vitiligo treatment.
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hi All. So ive been taking xeljanz on my own now and found doctor that is willing to do my blood work. 5 days into xeljanz and i have cold it could be from the change of weather but I can't help but think that having cold now sts my immune system to fight.. therefore it really doesnt help. is my thinking correct?
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It's normal. As soon as I start an immunosuppresor I have a cold the same week. Often I have symptoms the next day!
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