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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 sadele on
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Hi Starshine, I've been doing steroid shots in my scalp. I haven't added Plaquenil, but I have considered it. I see Dr King on Tuesday, 11/3. We discussed adding prednisone,a large amount 1 time per month. I really don't feel very strong through this whole experience... Some days I find more strength than others but the root of these feelings feels like it's about to crumble. Unfortunatly I'm having a really hard day today.
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Permalink Reply by Summer2000 on
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Hang in there. You are doing the right thing going to see Dr. King. I am in a vet similar position to you, finally took the trip to CT last week. Dr King has a very calming and reassuring way about him. I left there feeling positive for the first time in a long time.
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Summer 2000 how long have you been on xeljanz and what dosages? I have been on 6 months 2 pills a day and 1 month 3 pills a day. Started shots last month and nothing so far!Did he say there was still hope for those of us not responding?
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I was on 10mg a day for 4 months, then 15mg a day for 5 weeks. Not a sign of hair in all that time. For a short time last fall I was on Ruxolitinib - not long enough to have an idea if it worked. Dr King out me back on that last week, go back in 3 months. He was confident it would work.
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Good Luck Ruxolitnib is so expensive I don't think my insurance would cover it.Is it stronger than Zeljanz.
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Hi Summer in the same position your in.Why does Dr King think Ruxolitnib will work better than xeljanz.How did you get your insurance to pay for such an expensive drug?
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Serina,
I am sorry you are going through this. When I started xeljanz I couldn't have imagined it not working - I felt so hopeless and really sad. I really believe this to be one of the worst diseases as to how it affects our self esteem so badly. Although it's working for me my dermatologist told me that it isn't working on some people and her and the Columbia team believe it to be the pathway that your alopecia 'runs on'. I'm not sure exactly what jak xeljanz inhibits but there are 1,2,3 jak inhibitors .. Maybe you could look into trying a different jak inhibitor like jakafi .. Not sure how much that would cost and what not but maybe better than spending all this money on the xeljanz
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Permalink Reply by Xeljanzmiracle on
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So sorry to hear you are frustrated and sad. Are the hairs that sprouted 2 months ago the same length now? Have any of them turned dark (terminal)?
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My insurance pays for it; won't pay for Xeljanz.
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I am feeling very depressed and frustrated as well. I have been on xeljanz since March. My dosage was increased to 4 tablets per day about 3 weeks ago and I am still not seeing anything. I've tried so many different treatments through the years and have always ended up with nothing but expenses and heartache. I don't mean to be overly dramatic, but I had such high hopes for xeljanz. I really HATE alpecia!!
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One thing I have realised that people taking xeljanz have had success by taking another immune suppressant either before xeljanz or along side xeljanz. That's not everyone but a lot of success I have realised that myself. Mybe you could consider that ? Obviously consult with your Doctor first.
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Hey all..after reading all these responses I wanted to share what's being going on with me: I was on 5mg BID for about 5 months with growth showing all over my body... (Minimal but it was was growing and the first time I've seen growth like that in over 10 years). I did take prednisone 2 of those months which I believe helped. Of course you can't stay on prednisone and it appeared as soon as I stopped taking it, out of nowhere.... I lost it All:( I'm sorry for all of those that aren't seeing results. I still continue to have positive thoughts that something is going to work!!
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