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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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Replies to This Discussion
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Permalink Reply by sadele on
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I had some lashes grow in. It they have fallen out. I have a few little hairs on my left brow but nothing that actually looks like an eyebrow.
The back of my head is still full of hair. It's the top and sides that are so thin now you see my scalp..
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Permalink Reply by strawberry on
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Are you still taking Xeljanz? I know you stopped it for a while because you had anesthesia.
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Permalink Reply by Suzie on
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I am a little nervous about take the Xeljanz after reading many people have had shedding. I have been slowly losing my hair for about 2 1/2 years. I have several bald patches and have been diagnosed with AA. I was on Orencia and after 6 months noticed a small patch. Then more patches came and still continued the Orencia and began steroid injections. Well, after much shedding I decided to stop the Orencia thinking that caused it. My RA has gotten so bad that I need to take something so my Rheumatologist agreed to put me on Xeljanz. My existing hair is growing, but I cannot tell if my shedding has stopped or is continuing since it is such a gradual loss for me.
I thought that I might kill 2 birds (RA and AA) with one stone by taking the Xeljanz, but now I am having second thoughts as I don't want to lose any more hair. Any thoughts?
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Permalink Reply by Jcortez05 on
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I don't think it's the zeljanz that is causing. Me to shed or hair to thin .. I honk it's the anesthesia I had or the stress .. I only lost all of my hair after my csection ..had a very traumatic labor and delivery and I think that did it . . I'm back on zeljanz and this time around my hair is growing in very thick .
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Thanks for your response. I think I am going to take the chance and begin the Xeljanz next week. I have to get my bloodwork first. Still nervous, but the RA pain is almost too much! I am still going to continue taking my supplements, but might wait for the steroid injections.
I am fortunate enough that I can still cover my patches (unless it's windy outside, then I have to use toppik fibers). I just want to see some regrowth and no more shedding!
Anyone else have more shedding while on Xeljanz?
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Permalink Reply by Annipanni on
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Susie
If it is any consolation, I have RA. I had normal hair until I started taking Enbrel, followed by Humira then on Actemra. I went from AA to AU. Stared to shed after 3 months on Enbrel, 4 years ago. Denial by rheumy about drugs causing it. They say if you have one autoimmune disease you usually get others.
Did my research- all above drugs are TNF inhibitors. I found out about Xeljanz found a very sympathetic dermatologist spoke to her about it. She said the results were sometimes good sometimes not. She wrote to my rheumy and he changed me to Xeljanz for a trial. If it didn't keep RA under check after 3 months I would go back to Actemra. So far good for RA and hair has started to grow back! I had lost every hair on my body, no eyelashes, eyebrows, nostril hair-nothing at all. I now have all that back plus a fine covering of sadly grey hair( I am 58)all over my head. Been off Xeljanz for two weeks with an infection( as you have Too) no sign of shedding, a hair has even grown out of a mole in that time- never thought I would get excited about that!
Give it a go it may work for you too. I am in Australia not sure where you are,if you want names of rheumy here.
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Annipanni, wow, your story sounds similar to mine...except I didn't notice hair loss while on Enbrel or Humira. I had to stop using them because they stopped working for my RA (I was on them for a combined 15 years and never lost hair or at least it wasn't noticeable and I had no bald patches). It wasn't until I took Orencia that I started losing hair and have numerous bald patches. My Rhuemy also swore up and down that it wasn't the Orencia that caused the hair loss.
I beg to differ.... So thankfully I now have a prescription for Xeljanz and will begin taking it next week after my bloodwork.
I load up on supplements like Vitamin C, daily multivitamin, (and other supplements specifically for hair) as well as a smoothie (with lots of antioxidants like blueberries, cherry juice concentrate, banana, spinach,) to help with infections since our immune system will be compromised while taking these biologics. I swear by the smoothie I take every morning because I have rarely been sick since being on the biologics for the past 15 years!
Thanks for sharing!
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Thanks for that Suzie I never have tried a smoothie like that, might work with some supplement vitamins. I seem prone to some infections. 15 years on biologics -I didn't even know about them until a few years ago and my RA got worse after menopause. I have had it for 35 years. All previous biologics also stopped working for me too after a year or so except Actemra. I found I got hair loss on methotrexate and also arava but it was thinning not patches. I think some more research, perhaps we need to speak up more and push it with the pros, needs to be done on the side effects. Hope the Xeljanz works for you as well.
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Does anyone out there know why the scalp hair seems to come last and grows in patches opposed to all at once eyebrows came back full along with eyelashes and are still growing and came in black but the scalp is white patchy hair. I am finishing my 7th month on Xelljanz. There's not one normal thing about this disease and you would think by now some medical professionals would no more.
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hi James
How many pills do you take ?
Have you been on 3 pills
Thanks James
Hope all answer you question?
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No sultan I'm on the 11 mg once a day that's what my RA doctor has me on. I don't want to start changeing Doses and even if I did decide to I couldn't beings that when it is perscribed For R A its only to be perscribed by the recommended dose which Is eithe two 5 mgs a day. Or one 11 mg tablet a day. Xelljanz is doing clinical trials now to see if stronger doses can be used for RA and it can take 2 years to know there not sure about the long term effects of Takeing stronger doses
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