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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 kevin on
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what do you think frida after 1 month 10 mg
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Sorry for late reply. Totally missed this somehow. Pretty amazing results. Very very quick. I wonder if men respond faster. So many guys seem to respond quickly and with the darker hairs. Mine is all back now except for the front spots where it is back but still white. I would be very encouraged with your response. Three more months and I think you'll be covered enough to not appear alopecian. I get so excited seeing such great responses.
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Hi all,
I reduced my Xeljanz dosage from 10mg per day to 5mg per day the first week of January. Thus far, I have noticed no new spots... knock on wood. My hair has been shedding lately, but I have been under a lot of stress and I continue to remind myself that some shedding is normal for the average person, even without Alopecia.
My derm wants me to eventually take 5mg every second day.. which frightens me, but I am willing to try to see what happens. Eventually I will want children and will have to quit cold turkey.. the joys.
Will continue to update. :)
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Are any of you trying restricted diets? I'm just recovering from the flu and pneumonia and haven't started the xeljanz yet, I have my first months supply but I want to feel 100% before I start it. Meanwhile, I've gone back to gluten, dairy and low sugar diet. Filtered water and a bunch of supplements. I'm noticing with a magnifying mirror and certain lighting, tiny hairs coming in all over my head. I am AU, and had the vellus hairs come in once before but they only grew to about 1/4 inch before falling out again. I was very frustrated and went off my diet completely, back to coffee and a glass of wine occasionally. There was absolutely no sign of any growth and that really scared me so I decided to commit to the diet 100% and use the xeljanz for as long as I can. I'm hoping my body will fix itself, if I stop all inflammatory foods. My thyroid was the first problem but I've got that regulated now. I have seen a functional Dr., completed allergy testing,and every blood test imaginable. She's helping me get my system balanced.
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I haven't tried the Functional Dr yet, do you think its worth it? My doctor took me 100% off dairy, gluten and added 4000IU Nordic Natural Pro Omega, Vitamins D, Claritin 2x day and we watch my Ferritin very carefully testing 2-3 times a year. The dairy and the Ferritin are clearly the most important for me and that diet helped my hair growth immensely. I was a mess for 10 years before that and it really made a difference. BUT every time I need an immunization or even novocaine it triggers an episode. 6 months ago I had the shingles shot and I'm still not without a hat! Now my first grandchild is due in May and I need whooping cough! Here we go again! Im trying to get into a Dr that uses Squaric Acid to see if I could head it off this time but can't get in till June. Frustrating
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My functional doctor, who is an MD. told me to avoid vaccinations. About 6 months before I went AU, I had a shingles and flu vac. the first time ever getting either because I was going out of the country I decided to do it. I feel that those triggered my hair lose. She told me that people with autoimmune diseases should avoid vaccinations. My UCSF doctor, the one helping me with xeljanz wanted me to get a pneumonia and Hep B vaccination. I told her no. I'm 67 and really don't feel at risk for hep b and I just had pneumonia. The nice think about the functional doctor is they will test everything. My other doctors weren't concerned with low t3, and the hormone testing revealed some low testosterone, She's prescribed a number of biological hormones to help me balance that. I still haven't done the spit test or the heavy metals but plan on doing those next week. She also prescribed LDN but I can't say that helped.
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Wow Carlie
Im glad to hear that I’m not imagining this, most of my dr don’t think immunizations are a problem but it happens every time. I don’t get flu shots any more but I’m told I can’t avoid the whooping cough because of the baby. I wonder if there is a test to see if I really need it?
I guess I better find a functional MD!
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I got the whooping cough shot and also a flu shot back in October and did not notice a difference.And 5 years ago when my hair spontaneously started to grow back again was 3 months after getting shots to go out of the country.
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Hello all,
i always said that I would keep everyone on this site updated. For those who don’t know me, I had sudden severe hair loss three years ago. I lost every almost hair on my body within 2-3 months. I began xeljanz and had complete regrowth, I was a very good responder to the medication. I stopped xeljanz in June of 2016 and got pregnant soon after. I have been off xeljanz since. During and after pregnancy everything seemed to be going well my hair got so thick and really grew. About a month ago I noticed a dime size patch but tried to just ignore it. I now have six quarter sized patches. I am going to the doctor on Monday for some cortisone injections. I really really hope that they work this time around but last time it did absolutely nothing. These patches have gotten bigger but it seems drastically slower than when it happened the first time. I do not want to start xeljanz again but I really fear for the worst and wish more than anything this awful disease didn’t exist for any of us.
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