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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 Kasten on
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Hi all,
I also wanted to provide an update. I have been on Xeljanz for quite a long time - from August 2014 - December 2014 at 10mg/day. Then again from February 2015 to May 2015 at 10mg/day. And then from May 2015 - July 2015 at 15 mg/day. And then started 20 mg/day in August. At 10 mg/day, I was growing vellus hair, but it did not become terminal and pretty much stagnated in growth. When I upped to 15 mg/day, my vellus growth on my eyebrows and head started to spread and on my eyebrows and some parts of my body started to become a little bit more terminal (just not terminal on my head). Since I upped to 20 mg/day, my vellus hair on my head has started to become what looks like terminal and my eyebrow and body hair have also become terminal. The growth all over my body is diffuse and not thick just yet, but the difference is definitely there. For me, it seems I have had the most success on Xeljanz at 15 mg/day or up. It seems like 20 mg/day is high so my doctor and I are taking things carefully. I have had AU since I was six and no growth on my head for over 15 years. My conclusion based on reading all the research out there and based on the anecdotal evidence on this site is that Xeljanz works but does so at various dosage levels based on a person's body. For me, I am hoping that I can continue at 20 mg/day until I see much more growth and then lower to see if I can still grow or maintain growth at 15 mg/day and then to 10 mg/day.
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This makes a lot of sense. I was on 10 mgs for five months with a lot of vellus, but no terminal and the growth seemed to stagnate. On the 6th month I upped to 15 mgs and am starting to see some real growth, although still no pigment. I agree that some people may need a higher dose at least for a while. I would like to try 20, but am concerned about the safety aspect and of course the cost.
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Today going to pick up my 6 th bottle of xeljanz.Everytime I go and swipe my credit card I feel nausea I feel like I'm throwing away hard earned money on something that is not working for me (and seeing everyone's success and then I look in the mirror and nothing is depressing me)don't get me wrong I'm happy for everyone who is growing hair because there is hope out there.If it is just a matter of time I will keep taking it but when do you know if this isn't going to work. I want to wait at least till we find out about all the trials hopefully in October.My other thought reading about other people who were on methotrexate or plaquenil or even Abatacept for several months (which are covered by my insurance) and then switching over to xeljanz seem to be having amazing results.So what I am asking is if I switch over to one of these other drugs till Apri(that is when I started and can use the copay card again) then start the Zeljanz again could I possible get those amazing results quickly!Help any suggestions or ideas would be much appreciated!
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Football Fan - I think having a doctor who specializes in Xeljanz/Alopecia is critical. I've said before in earlier posts that Dr. King is the absolute best. Adjusting dosage, being patient...or maybe use another drug as well are all possible options. My daughter was on methotrexate for 8 plus months (nasty side effects on the stomach so we switched to weekly shots)...so she definitely had a strong start when Xeljanz was introduced. 6 weeks and she is well on her way to full regrowth. I guess what I'm saying is there is no "one" way to treat this. Keep up the positive spirit and know that we are rooting and praying for each other.
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I tried to make an appt with Dr king but had no luck but others seem to getting appts easier. I would try to get in with him as he is experienced and willing to change the regimen by adding other meds and so forth. Some people on here are doing monthly prednisone on top of the xeljanz and seem to be having results.
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Ask Pam at his office to get on a waiting list for cancellations.
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Football fan also what dose are you on? I have been rheumatologist shopping as many rheums are known to give monthly samples of xelnanz. After all they do prescribe it. This could be an option if cost is a factor and it would allow you to up your dose
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Hey football fan, sorry to hear you are frustrated. This disease is probably one of the most frustrating things most of us will ever have to deal with. I was on 10mg of xeljanz for about 4.5 months with only slight vellus hair regrowth when I added plaquenil. I also got cortisone injections because those used to work for me and I figured why not. Within three weeks I had almost the entire top of my head covered in terminal hair and now I have hair filling in in the back and sides where i got more shots recently. I was also on methotrexate for 8 months prior to xeljanz so that may have helped as well but i think the cortizone shots really sped things along and the xeljans is allowing the hair to stay. Might be worth looking into? (Also I know what you mean about swiping hte credit card :( )
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Julie just wondering how was your bloodwork when you were on the Plaquenil and the Xeljanz? Also how long did you stay on both? I'm been on 10mg a day for 5 weeks and nothing so far. I used to get cortisone shots but stopped when I started the Xeljanz. I'm going to call and make an app. to start the the cortisone again. I'm interested in the Plaquenil did you get any side effects? Sorry for all the questions I feel like I learn so much from everyone with all there questions and posts!
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No worries at all! I haven't had any abnormal bloodwork after starting plaquenil... actually one of my friends who has sjqourans syndrome has been on it for over 6 years and has never had any issues and that's what made me feel like it was ok to do for awhile. They recommend you see an eye dr. to monitor your eye health so i did go to the eye dr. He said its super rare for there to be complications with plaquenil and typically only happens for people who are on high doses for long periods of time but that it was good to be safe and monitor every 6 months or so.
Ive been on both for about two months now. The only side effects I got was nausea and that went away when I took the medicine with food. Good luck with everything!
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