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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 Cocopuffz17 on
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I do not know enough about the half life of the medication and how long it takes to get out of your body or to reach a steady state in the blood after you start taking it again.
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I had one spot within a week after dropping to 10,mg had 6spots after 12
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I've been dealing with issues since last year.... But I think I may have diffusing going on with the sides of my hair... Anyone have this while on xeljanz? What did you do to correct it?
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(Dec 2019)
I have had great success with xeljanz, however the last few months I feel like I've been regressing. My spot has been filling in however I do feel like my sides are slightly more diffused.
(October 2019)
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Hello friends,
I don’t want to be on Xeliganz anymore because after 2 years taking medicine my hair didn’t come back completely ( just some grew back) and even I increased 25 mg and not any changes, my question is how should I go out of medicine to not damage my body as I heard I can’t just quit Xeliganz and have to be slowly.
Any experience appreciated!Thanks
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Hi Shad . Sorry to hear you didn’t respond but have you tried steroid pulsing with xelijanz ?it may very well work for you . How long have you been AU ?
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Hi Meedo, thanks for your reply!
I tried before 40mg prednisone with 10mg Xeliganz but in the back of my head I got some hair in front area I got hair as well but not enough at all still have to wear wig, so decided to not continueim AU for 10 years. In Vancouver we don’t have specialists for hair loss to go regularly the only we have charges $700 each visit.
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I’m sorry You didn’t get the results you were hoping for , but one thing I would say, try to not get discouraged as I know of people who have had au for more than 10 years and eventually got their hair back . I think you should try the ruxolitinib as some people who don’t respond to tofa would probably respond to ruxolitinib . I also think that beacon sell them under the name of baracitinib if I’m correct . I just don’t know what dose but maybe someone else who had luck with it can guide you. Good luck Shad
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I certainly don't know answers but I do know that once an autoimmune disease is triggered it's hard to stop it. Like trying to stop a bullet. It's not like cancer where the cells can be removed or killed off. I'm hoping that in time the follicles will strengthen and my body will heal enough to start the weaning process. I tried cutting my dose and I started shedding within a week. Before I started tofacitinib, I tried the healthy diet with the help from a nutritionist who claimed to be able to cure alopecia with her regimen. For 1 year, no sugar, dairy, gluten, coffee, alcohol, only filtered water 12 glasses a day at room temperature. Eat beans, (all types in cans or frozen) 5 times a day and at least 4 cups of nuts a day. Meats were okay too, I bought the packages of frozen salmon and chicken from Costco and cases of Garbanzo Beans, which I found were pretty tasty prepared right. Anyway, after a year of this I decided it was bad enough being bald but worse not being able to enjoy some of the foods and drink I love. Even though my hair is back now, I continue to where the wigs at times just to make it easier on my hair. I'm going to experiment with regular trims to see if I can get the thickness and strength back but it's a long process. I would be devastated if I had to start over again, so I will stay on the medication for as long as I possibly can. Luckily my system is tolerating the medication, in fact I feel healthier but that might be because I take several supplements, too.
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That's great you feeling better. What supplements do you take?
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2 months in and no results yet. Still shedding and whatever I shed doesn’t grow back. I know I have to be patient but it’s hard. Of course I worry that I will be one of the few that don’t respond. My worry increases because my situation seems to be different than many of you. My alopecia started two years ago but diffuse. I’ve never had a spot.
The alopecia has hit my body on my head, eyebrows, arms, and legs. In those areas I’ve been losing hair in a diffuse pattern as well. So far, the only unaffected areas are my mustache and pubic area.
I welcome all advise and encouragement :) Especially from anyone who had a similar situation.
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