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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 Meedo on
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Hello everyone. I’m a 38 yr old make from the Uk and I suffered from AA since I was 11 up until age of 21. I believe my condition went into remission and since then I have grown all my hair nice and thick until 2 years ago I started developing a small batch on the back and it recovered then I had a tooth infection followed by a course of anti biotics and A minor hair transplant to my receding front line back in October 2018. My hair was thickening up and no problems until February 2019. Massive shedding on my beard and moustache . I went crazy searching online . Changed my diet leaky gut theory supplements fasting and all that jazz. It has slowed my shedding but hasn’t stopped it. I have seen two private dermatologists all they offered was steroid ointments under occlusion. The condition developed to totalis and I currently only have most of my body hair and eyebrows only. I’m devastated and I was thinking to buy xelijanz anywhere in the world and take it myself. Until I found this wonderful blog. A blessing . I have read most of the pages on this blog and impressed with the support you give to each other and the tremendous success stories on X. I’m going to obtain the meds from beacon and start soon . However knowing how difficult it is to be monitored blood work wide in the Uk, I’m going to check my blood privately but I would like someone to guide me through it please! All I need is what blood tests I need to ask for ? Like exactly what to check and also any vaccines to take before I start. Any other advise would be very much appreciated. Thank you very much for taking the time to read my story
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Prior to starting regiment it’s recommend to be screened for TB, hep and HIV. The blood panels you need to monitor are CMP, CBC and lipids. These 3 panels should be monitored before beginning, 30 days after starting medication and then at 6 months. If results show to be normal then every 6 months after that. Good luck with everything
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Awsome. Thanks for getting back devices 561. Just one more thing, is it necessary to get a shingles vaccine ?
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No. If you are over the age of 60-65 you can consider that. I’m not close to that age group so I haven’t...
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In that case I don't think I will need it. Just turned 38 with no shingles history . Thanks a lot for answering all my questions and good luck
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Permalink Reply by Rascalx2 on
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My MD told me to get a shingles vaccine, because of the suppressed immune system, he told me if i get vaccinated, i need to be off xeljanz for 2-3 weeks, i am hesitant because i know i will shed it all off if im off it for that long. I have decresased from 20 mgs to 15 mgs and a little shedding but grew back, i have few stubborn spots the just never seem to grow in but i pretty much have accepted that i will never have thick hair i used to have, and it is the most its gonna be at this point . It is scary when you have a bunch of hairs in your hand, but it never seems to progress past that. Im 48 yrs old, so i am more concerned w effects after taking meds fir long periods of time. As for diet , i was eating for “inflammatory” diet for a full year and did not grow a single hair.. and taking 10 mgs of xeljanz a day. I only grew hair when i went to 20 mgs a day.. diet is important but never grew my hair back.. i eat a good clean diet for 25 years which helps w health in so many ways, but not much for alopecia.
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I totally agree with you. Diet is important but often not enough to grow the hair back especially when the condition involves the whole head or body ! I'm still undecided about the shingles vaccine as I'm against vaccines in general but if there's a strong advice to have them before xiljanz commemcment then I guess I should
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Good news for everyone living in Europe! Pfizer is about to start recruiting for their phase 3 clinical trial in 3 different locations. This is the PF-06651600 trial.
https://www.clinicaltrials.gov/ct2/show/study/NCT03732807?cond=Alop...
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Hello everyone, i’ve been in the phase 3 trial for pf-06651600 for just over 6 months and it’s been going really well. I’ve had almost complete regrowrh with very little noticeable side effects and i’ve been really encouraged and happy for the future of this disease. I have three somewhat stubborn spots, in the back of my head it’s not completely thick yet but there’s hair everywhere, and then the sides near my temples are struggling the most, there’s a spot on each side with no hair and the rest is/ was covered in extremely sparse hairs that have been taking a long time to thicken up. Just now i decided to rub some ginger on the sides because i read it can stimulate hair growth, but when i did i shedat least 20 hairs from the sides :( the whole time i’ve had any hairs on my head i’ve seen zero shedding whatsoever. which has been the last few months. I’m wondering if anyone on a medication who has grown their hair back has lost their hair while still taking the medication? i’m not going to say i’m not really scared right now. I still take the medication everyday but that was a lot of shedding at once from a spot that already had almost no hairs. I don’t know if it was the ginger or if somethings off and i’m shedding again, those sides can’t afford to lose any hairs they are already the most stubborn spots. Any feedback would be nice! I really don’t want to lose my hair again :(
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I also want to add that i’ve been eating more things recently that i used to avoid like the plague, like dairy, gluten, and sugar. I don’t know if my body is reacting to that at all? I don’t know what to do :/
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Congratulations on your success with the medication. Have you stopped the meds now after the trial of 6 months or you still on it ? With regards to the diet. It's very confusing as when I changed my diet and eliminated dairy and gluten my shedding stoped but I also had shedding while on a strict diet !! Just be safe and refrain from glutien and dairy and maybe try to incorporate anti inflammatory food and supplements such as turmeric and omega 3 . Good luck
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Thank you! The study is a year long so i’m only at the half way mark. That’s why i find it weird that i’d be shedding if i still take medication daily. I’m wondering if that’s happened to anyone else. The medication made me tolerate more things with less reaction so i found it exciting to incorporate more things in my diet. I was always extremely strict, sometimes bordering on ortherexia and only lost more and more hair. That’s why i thought i could finally just eat normally. But i guess i’ll try to clean up my diet again and maybe that in combination with the medicine will stop any shedding and help the stubborn spots grow in.And maybe some supplements. I just thought people who are on Jak inhibitors and have success wouldn’t require the other lifestyle changes as much.
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