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 Carlie on
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I don't know, my insurance covers my visits and I feel like she digs deeper and is more open to trying different things, She's the one that prescribed my LDN.
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Permalink Reply by Mashloum on
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Finally completed one-month Xeljanz (2.5mg per day one time) for my son 9yrs Anas, things is going well, small spots with camera zoom for white hair was not there, I hope it will progress for full
one question regarding the lab results, Parathyroid Hormone (PTH) shows high, result 48.2pg/ml while average 2.5-27
Also Ferritine in Serum at the lower and below the lower range
Any bits of advice in this regard
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hi Mashloum,
it seems lots of alopecians seem to have issues with thyroid. I have hashimotos (often get hyper and hypo lab results at the same time- so weird...). I also have very very low iron, ferritin and ferritin saturation levels which, even with supplements doesn't really go up. I'm going to have to go in for an iron iv if I can't get it up by next month. Think it's all part of the weirdness of autoimmune disease.
Hope you see some results soon- it can take awhile to get going which would be extremely hard for a kid. I remember as a kid a week seemed like a lifetime...
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Hi everyone, the physician checked the lab results and he was going to increase the dosage to 5 mg but the Triglyceride TG was at high level after one month of Xeljanz, so he decide to delay increasing the dosage till the TG decreased
currently he is taking 2.5 mg for the last 40 days
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Permalink Reply by DJ88 on
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Hey guys,
I need a bit of help. So I decided to attempt getting Xeljanz. I went to a derm thinking I would be able to get a doctor's approval easy especially since I know the doctor. But he said I had to go to a rheumatologist. I thought most of you guys went to derms? My question is, can a rhemumtologist treat alopecia aside from just xeljanz? Like, can they issue creams and or cortisone injections?
Lastly, im making an appointment to this brand new doctor so ill need a case built so he doesn't turn me down for xeljanz. Do any of you guys have any organized links, pages, or studies I could bring with me to help convince the doctor?
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Hi DJ88,
my situation is a bit different being in Australia but I see an immunologist for my xeljanz treatment, topical steriod stuff etc etc and a derm only if I need steriod shots. It's a bit weird but if it gets you the meds totally worth it. Rheumis probably have a better understanding of the med given its more widely used for RA...
If you search my name I have posted links to some studies to take with you to doc( the links might not work anymore- if not I can pm you some).
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My dermatologist sent me to another dermatologist that specializes in hair loss. She immediately started the process for me to get the first 3 months from Pfizer.
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You must live in the US to access Pfizer xeljanz for free. A draw back to living in Canada.
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Most dermatologist are not that well versed in Alopecia other than that it's autoimmune and that it can be treated with steriods, topical, injections or pill form.
That's about it. Most doctor's do not have the knowledge about xeljanz and AA.
The dermatologist that do in the United States are the ones that are specialists and have been watching this area carefully.
If you're in the tri-state area in the states I can give you a few names.
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