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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 Frida Rupert on
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Hi Singh, from memory it took about a month, and the first signs were a fuzzy vellus hair all over my scalp. It also lengthened my lashes and brows (which I had stubble before I started the pulse). I think with scalp hair everything is kindof in 3 to 4 month cycles. That’s why people who have “short term” alopecia seem to stagnate for 3/4 months before growth restarts (ie AA). I was about month 4/5 on the tofa when I started the pulsing so I think this sped up my progress as the new hair cycle was already cycling in. I think giving it 3/4 month would give you an idea of if it’s going to work. If in 3/4 months you are not where you want to be with growth I’d maybe wean off to give your body a break and then do another pulse if you feel comfortable with the meds and your health is good in around 6 months time. I can’t remember if you mentioned using minoxidil - I think oral minoxidil is probably something that would boost the effective ness of the tofa but I’m unable to find a reliable supplier of oral minoxidil so it’s a matter of finding a source.
i have everything crossed that the growth really kicks in for you!
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Thank you so much Frida! Will take all of your advice on board ! Your a superstar !
Thank you!
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Hi Frida,
i have had AA for 8 years. I started taking 11mg Xeljanz (branded) 3.5 months ago. I got incredible results within 8 weeks and seems to continue improving. I have noticed that the growth has seemed to slow down from when I started but not stopped. Another thing I noticed is the areas that where not responding and have just started to respond the hairs are white. I wanted your opinion on my growth pattern. Did you notice that things slowed down after the initial regrowth? What about the white hairs? Thank you and I’m so happy that this forum is available it’s been such a resource in looking for information on this menacing condition.
TS
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Hi TS, That’s great results in 8 weeks! I think the response is different in everyone- some respond quickly but sparsely - ie they notice growth early but it takes ages to thicken up, other times it comes back in patches before filling in, sometimes in bursts and other time consistent - mine was a combo. I took ages to start response and then it was brows and lashes where I noticed it first, and then vellus hairs which started on the sides of my scalp and then the top, I then had it all come back except for two patches in the front which had fuzz but didn’t mature into pigmented hair until about 6 weeks after the rest. If you have white hairs on those slower areas I’d say they are on their way to filling in, like my patches which filled in about 6 weeks behind the rest. This is a menacing condition - I like to think it’s not the curse it used to be before Jak inhibitors - just hoping a solution that works on the remaining 20% of non responders comes out soon. And that this forum is helping kick alopecia in the butt makes me feel good! Lol!!!
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Thank you for your response Frida!
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Do you plan to stop taking the medication at any point? I was hoping to stop if/when I achieve full growth...
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Hi Devices561,
I’m not thinking of coming off until there is another effective treatment or other health reasons force me off (which I don’t anticipate.). I do think that after a long period of stability you can wean down, but this needs to be very very slowly and after a significant period of stable growth. It’s hard - because I do believe some people can obtain growth and then come off without necessarily relapsing but it’s difficult to know who those people are without throwing the dice and trying. For me the emotional consequences of relapse is too high (I had such severe anxiety with the alopecia I could barely function - and as a mum I have to function) so I’m not even really thinking about it. That said - my long term (and I mean years not months) is to try and get down to 5 mgs per day as a maintenance dose... but this would be over a very long period of slowly reducing like 5 mgs a week for months and months until I got down to 5 mgs (I’m at 20 per day atm - in a few months I’ll try to start slowly decreasing). This schedule would be thrown out further if relapse occurs etc. I recently came off the meds for approximately a week for a hernia surgery. I dropped to 5 mgs a day for the week preceding up until 3 days before where I stopped, than restarted day 4 after once the incisions were sealed and healing. So far no repercussions from that small break but I’m back on my normal dose now.
its a personal thing - if you feel emotionally strong enough to cope with a relapse than trying to come off the meds might result in a good outcome.
Just see see how you go with the meds, watch your blood work and take care of yourself is the main thing at the moment. Hairgrowrh is a slow process in even non alopecians - in us it’s even slower- so let yourself embrace the process and worry about coming off later when you are more aware of how your body is going to go on the meds.
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Permalink Reply by Rascalx2 on
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My hair came back completely white when it started coming back, over time it has darkened...but i dont care if its white , gray or brown its hair! I have shedding that happens here and there and when it starts to fill in its pure white, kinda punk rock! Whenni look at pics from when it came back all white, i grew out goatee and i look 15 years older then i do now.. it was such relief to get hair back! Be patient it is working!
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Thanks for the encouraging words and happy that you got your hair back.
Cheers
TS
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