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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 Patchylatchy on
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Thank you so much Frida. I really appreciate you taking time to write this down. It made me feel better. May I ask have your doctor gave you instructions when taking medication. As in food to avoid? Or anything else?
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Hi Patchy Latchy,
Basically he just said to stay away from grapefruit, and watch the alcohol, as in a few drinks a week ok but daily alcohol may put strain on the kidneys and liver. Other then that cholesterol can go up, so managing that with diet and/or meds may become necessary. The other sides are some weight gain (manageable) and acne (good face wash and acne cream can help), particularly at the beginning and transient indigestion as the body adjusts. I think the main thing is to have blood tests every 3 months minimum at the beginning so you can ensure you know how your body is going. Most people seem to cope remarkably well with the Med, some have to adjust lifestyle (stop drinking so much,eat better, stop smoking etc) and find they feel healthier on it then off (I do), a very few don’t cope on the Med. Early days is the hardest, particularly before you begin to see response. Wish you all the best with it!
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Thank you so mucn
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Tori, I would keep going, it often can take more then 6 months and if your alopecia is in a particularly strong phase it probably will take longer. I would stay on current dose, consider an oral steroid pulse (search on this thread- about 3 different ways to do this), and hold on. This Med works on most but patience is a must. It can take up to year to stabilise and growth to really kick off. I know it’s tough, but many people see nothing for 4/5 months and then see results.
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Yeah I feel you and with AA not AU I think just sticking on the meds without steroids is the best option. Totally get the emotional wreck aspect, believe me - I was the same, Sometimes I had to take Valium just to get through the day during my horror year. But just run the mantra “this is temporary, I will be me again” through your head when it gets really hard. I’ve had some tough moments in life, health wise, and nothing undid me like alopecia so don’t let it be a reflection on you, many of us on here have felt that pain and that absolute terror of being totally and utterly helpless.
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Permalink Reply by Rascalx2 on
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I have thinned out hair but no bald spots as of now, i had bald spots intermittently but hs been good for past few months, I believe its from good dose of vitamin D from the sun. I decided to not get flu shot this year as I feel it really ramps up immune system and bald spots appeared about a month later... made a few visits to dermatologist for shots and alopecia was “angry”... it finally settled but maybe worth the risk of flu vs upsetting the sleeping alopecia beast.. anyone else have thise effects w flu shots , immunization shots?
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I’ve had the same experience with flu shots and any immunizations. Been charting myself for over 15 years. I don’t get the flu shot or any other except when new grandchildren are born and the drs day it’s necessary. Always results in hair loss for me. A compounding pharmacist suggested the last time when I needed whooping cough vaccine for the baby to take 2x dose of probiotics for 2 weeks before and after the shot. It did help.
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hi kathy, i live in chicago and go to northwestern. Can I ask who do you see in northwestern and how is your experience so far? thank you.
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Hi everyone. Can someone tell me please what are the common sideffects from xeljamz? Not that it would stop me from taking it. I just want to have expectation..what would show up on blood work?
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Thanks
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