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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 Carlie on
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Hi Bumblebee, thank you for sharing and yes what a roller coaster ride of emotions. I've been AU since October of 2016. The xeljanz seems to be working and I'm worried about my insurance company not covering it. I'm even considering going to Turkey. What do you mean when you said you are using it off label?
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So sorry to hear, but what beautiful hair you do have! And thick! Did you have AU? Sounds like an allergic reaction for sure. How long have you been taking xel?
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Thank u. Yes I became randomly and rapidly AU about a year and a half ago without any prior history of hair loss.
I am allergic to a lot of things (nuts, wheat, pollen, dust mites.. etc) so an allergic reaction is definitely a possibility. I might be going in for a chemical allergy test soon to see if any common hair product ingredients bother me.
ive been on Xeljanz since August 15, 2016.
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Hi Katrina,
so sorry to hear about your set back. Ugh this condition just is a roller coaster ride. Your hair still looks amazing and thick enough is conceal. And lucky those areas are hideable. Emotionally I know it must be really touch and anxiety inducing. I have a bad time with antibiotics and feel that they didn't help my alopecia so maybe when they clear the system the hair will start back. I had a spot in my early twenties (two separate times) which showed up 3 months after antiobuotic use and my latest episode came about after antibiotic use, ear infection land glandular fever. The spots in my early twenties quickly resolved with steriod cream and some yoga etc. I think perhaps upping xeljanz temporarily may work to contain....Plus the creams your doc gave you. I'm pretty sure it will resolve quick as it looks like hair might already be growing back in those areas ( stubble). Your hair still looks wonderful, keep thinking positive - this is a small set back and I'm almost certain you won't become At/Au again. Lots of love
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Thank you so much. I really hope so too. That is interesting you've noticed set backs after taking antibiotics, too...
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Permalink Reply by Rascalx2 on
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Im sorry you are in this place, I had a few bald spots appear in the back few weeks ago. It is so scary, and there is such a feeling of despair. I become afraid that im gonna lose it all again because this is how it started the first time... I felt so powerless....”im on 20 mg of xeljanz, and its shedding , niw what do i do?” I went to derm and he gave me shot in butt, it seemed to stop or settle down flare up for now. But I have to say that this alopecia is like a runaway train leaving me feeling like there are no options. Right niw xeljanz is working and the shots helped, but i also have that fear or worry about if it stops working.. I also have ulcerative colitis which is autoimmune. It is not uncommon to have a flare up every so often.., same with other auto immune.
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I did some research regarding the ingredients in hair products related to hair loss. I found following things to avoid: PEG, Sodium Laurel sulfate, DEA, T EA, paraben, etc. you can google search. I hope that your hair will come back,
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Thank you for sharing. I see Sodium Laurel Sulfate is in all of the products I was using...
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Are you dairy free Katrina? My doctor says that the biggest allergen and since this is largely about keeping your immune system calm it’s worth giving up. It’s hard because there are so many names for it( casein etc) but I think it’s worth a try. I am much better than when I wasnt milk free. I still have patches like you but I was practically bald when I gave up milk products.
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I’m not dairy free. I’d give that a try if This doesn’t stop soon. But I do think it is slowing down. Today I only counted 20 or so hairs lost in the shower.
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