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 kevin on
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Bonjour, qui peut me traduire cette vidéo il rend deux fois je demande personne pour revenir un petit service
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Why are you stopping? Because of health concerns?
Did you achieve the growth by Xeljanz only or take anymore to speed up the growth? e.g. biotin, follic acid, methothetrate.
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Permalink Reply by Jckah on
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Yes, I chose to only be on xeljanz for a specific amount of time due to health concerns. I knew this wasn't a long term option for me going into it, I just wanted to see how my body responded. I never went over the 10mg dose, and I also used rogain, cortisone injections every 6 weeks, and biotin vitamins.
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Hi everyone I need some help !
Is there anyone in the New York area who have used the new copay card for 2016 and got 4 bottles ? Or anywhere in the us?
I need to know asap please. Message here or inbox me. Thanks in advance .!
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Permalink Reply by AlopeciaDestroyedMyLife on
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Hi Guys,
I'm sorry I have been a bit dormant recently and have not been answering my messages, I will make it duty to go through each one and reply. I've been getting my life back on track and it's going great!.
Here are February's photos:
I have now been taking Xeljanz for nearly 20 months.
Hopefully at the 2 year mark I will finally have everything back.
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Permalink Reply by kimberj on
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That's wonderful! I am so very happy for you! Praying for full regrowth!
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Hi Kimberj, how are you doing? Hope things have started to turn around.
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Hi Starshine! I have been doing good. Life has been SUPER busy the past couple months. I'm sorry to report that I have lost alot of my hair while still on Xeljanz and Plaquenil. I've noticed that my eyebrows have started to thin as well. Totally sucks but there is nothing I can do about it :(
I will say that the meds are truly working for the purpose they were made for. My joint pain is almost non-existent and the inflammation is gone. I pretty much have my life back except for my hair. I worry that my immune system will over take the meds though, especially since my hair started falling out again. We shall see.
I hope all is well with you!
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Hi Kimberj, I am really sad to hear you lost so much hair. Has it stabilized at all now that things have settled down for you? Since you are still taking the meds, you would think it would start to regrow again. What does your doctor think? I am glad that you are doing well and at least it has helped your RA. My hair is doing good. I have almost full regrowth, but it is still mostly white. I will try to upload a pic soon.
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It hasn't stabilized at all, just continues to fall out. My doctor is kind of baffled at the fact that it fell out while I was on the medications! She thought it was a sign that my immune system was over empowering the meds. That's why I worry about a relapse of my RA. She doesn't want to up the dosage to "just save my hair". I kind of agree with her. I work in the medical field and see ALOT of side effects from medications. It is scary.
I am SUPER happy about your regrowth!! I can't wait to see a pic. As far as the white hair, be patient. It took a good while for the pigmentation to return. I'm sure at this point you don't even care what color it is! Lol.
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Couldn't you just up the dose for two months to see if it stabilizes. It is such a shame, you were doing so well. I know it must be frustrating and causing you more added stress that you don't need. I have been on three pills a day for 6 months now with no problems, but I do understand that it could increase the risks. I am excited about my regrowth, but at the same time, I worry that it won't last as many oeople have had relapses and now we know that it can even relaose while on the meds, not to me tion the ridiculous expense. Stay in touch Kinmberj and please let me know what happens, I am so wishing for it to resolve for you. No one deserves this rotten disease.
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