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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 gatesm on
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Hi everyone,
I haven't posted in a really long time. After years of being AT (fairly sudden onset in my mid-thirties), I started Xeljanz finally around winter 2018. I wanted to post my experience for those of you taking a long time for growth and to say thank you for all the information from this site.
My growth was slow to nonexistent at first for many months. My amazing Dr. kept offering to add steroids. I refused because of my previous steroid experiences. It took many months for growth to start (I want to say close to 6 at least) and almost 13 months to get full regrowth though it was very short and I didn't stop wearing a wig until over a year of being on Xeljanz for my own personal comfort level.
I appreciate the thorough replies Frida and others have posted about Covid-19.
My bloodwork has been great. I have actually been feeling so much better than I have in the past and haven't gotten sick hardly at all since being on Xeljanz. On other meds and in the past without meds I was getting sick a lot. I'm not sure if this is just a coincidence or if my immune system is calmed down and/or not being destroyed by other methods (steroids, other things i have tried). Other than weight gain, which is frankly normal for me anyway in the best of times, I see no side effects.
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I too, haven't posted for a while either but I do read the posts once in awhile. We're hearing quite a bit about some of the medications that treat autoimmune diseases that are possibly preventing the virus in those who take them, Lupus is the main one. Honestly I think that tofacitinib might be one too! I'm a Realtor and was around some clients that were really sick a few weeks ago, I was in their house doing open houses and showings plus helping with some staging. The symptoms were fever coughing, fatigue and the boyfriend caught it from her then she got sick again after he was better. They were not tested and didn't see a doctor but both were in bed for days. I thought I was getting it for a couple of days, I was fatigued but that might have been the stress of that transaction. Anyway, I wonder if the Lupus medication is a Jax inhibitor. Frida, what do you think? By the way, since I've been using the Rogaine 5%, going on about 3 months now, my hair is getting incredibly thicker! I could literally be a spokes person for the product. I'm still ordering my meds from India and taking 20 mg a day. Blood work is alright, white cell count was a little low but I think that's normal for taking this medication. I've attached some pictures. I was AU for 2 years before Xeljanz.
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Before Rogaine, taken Jan 26.jpg, 71 KB -
After, Pic take March 6.jpg, 98 KB
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Looks great Carlie, and the minoxidil is working a treat! I’m so excited for you. I’m not entirely sure what treatments are being used for the Covid 19 though I have read articles regarding the use of baricitinib in Europe and also plauenil, which is used in the treatment of autoimmune diseases and combining these with anti virals. My thoughts, and I remind everyone I am not a professional, is when you look at the lungs of people with covid, there is a rapid progression of inflammation in the lungs. I think Jak inhibitors are potent anti inflammatories, and I do think their is potentially an over reactive or a misfiring of the immune response to the virus as it is novel to our species. Our bodies haven’t fought it before, so it goes into super defensive mode.Those of us on here, unfortunately, know the damage an over active immune system does, and I feel that is why some of these medications, when used alongside anti virals are reducing the inflammation and allowing the antivirals to target the virus.
Generally my advice (not as a medical professional but jusy as a user of Jak inhibitors) is to be intuitive, watch your bloods and be vigilant with checking temperatures, social distancing etc. if your bloods have been good on the meds, if you haven’t been more prone to illness or infection on the meds, and your temperature remains normals those are good signs, however if there have been lots of issues with bloods, if people have gotten infections and viruses more on the meds consider reducing. It’s hard, but I think, because of what we have gone through we do have a sense of our own well being- and I would listen to that during this time.
At the end of the day if anyone does come off and does suffer set backs, we know we can come back and get on the meds and we will get better. This forum is here to support us all getting through, both the virus and any reoccurrence of alopecia. We alopecians are tough, we have advocated for our health through our journey so we are more experienced in advocating for our health then many others!
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Am I allowed to use a pill cutter for the 10mg pills?
My derm says I can even though the instructions say not to.
I just want to double check with those who many have done it before.
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Hi friends
just wanted to let you guys know after I stopped taking Xeljanz I’m losing my lashes in my 10 years alopecia I always had lashes but I’m thinking because stopped medicine now this happening to my lashes which is so depressing me. Do you guys have any suggestion if I use serums? Thanks!!
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Shad can you please call or text me 519 829 0754. I live in BC.
thank you for your help.
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Permalink Reply by Fonsi on
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Hello everybody.
I have read your experiences and I am happy that many of you had excellent results.
I started on February 27 of this year the treatment with 40mg daily of Prednisone and 20mg of Methotrexate weekly.
On March 1st (4 days of treatment) I shaved my hair (the first time in 18 years of AU).
On March 7, I started taking 2 x 5mg of Tofacitinib per day without stopping the previous treatment.
On March 17th I shaved my head and beard again. This time on the beard we find some black hairs.
On March 25, I stopped taking Prednisone and Mtx.
On April 2nd I shaved for the third time (I shaved more in a month than I did in 18 years).
Today 2 days have passed since shaving and it seems that all the hair is growing black.
I am currently a 10mg of tofacitinib per day but the dosage will be adequately based on the lymphocyte count. As soon as I can, I will post a photo (I hope in late April)
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What I published is absolutely not a result. But it's a sign that shows that there is hope. But I don't know if this will last. I don't know if it will improve and I don't know if I can continue.
Before starting the treatment, I had a high DHEA level. So taking Prednisone with high DHEA level creates a Cushing effect. For this reason, the fluff appeared in 4 days.
Methotrexate breaks down the immune system as well as Prednisone. But Methotrexate, at the same time also fights inflammation. For me it was important to see that the hair bulb responds in favorable conditions.
After two weeks (11 March) the lymphocytes were reduced to 36%. And the hair was spreading. While after another 14 days (March 25) the lymphocytes had dropped to 26%. At this point I stopped with Prednisone and Mtx. And it was at this time that the hair began to turn black. Now the drop in lymphocytes doesn't have to be so fast because it's extremely dangerous and even fatal.
At this point Tofacitinib should have easy play. April 8 I will do the blood test again. If the lymphocytes drop at a rate of about 2% per month, the dose is correct and must be maintained. If the drop is greater, then the dose must be reduced.
In everything you do and for every result there is an explanation.
Don't do anything blindly. Consult a doctor who knows what he is doing and who knows what to expect. Do not trust those who go by attempts.
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