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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 Rascalx2 on
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Lower lashes came back but none of the hair throughout is as thick as it once was including lashes
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Permalink Reply by Patchylatchy on
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are you referring to your lower lashes?
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does anyone know if xeljanz will be regular medication for alopecia anytime soon? as in some mainstream medication that all derms can prescribe without having to do through a hassle. When will it be? back in 2016 they said in 2020 it would, it doesnt seem so
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Hello everyone just starting xeljanz..doctor wants me to take one tablet 5 once a day for now..I see some taking two..is it normal that he recommended once per day as start? When did you increase the dosage?
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Hi, 5 mg is a very low dose. Most people start with 10 and then increased to 15 or 20. I started with 16mg-5mg in the morning and 11mg at night.
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Thank you. Thought so too
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Hi!
I started xeljanz last Nov and my doc had me start at 5mg (1 tab per day) for a month before increasing to 10mg. Then I stayed on 10 mg for nearly 6 months before going up to 20mg. 20mg seems to be doing more than the 5 or 10 ever did :)
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Thank you so much
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I had nothing on 10 mg a day, nothing on 15 mg a day, but growth when I went to 20 mg a day. We all have different responses, some of us may have results w low dose. I went up gradually. Think its a good way to start the drug. 5 mgs is safe to introduce our body’s to it. If you dont have side effects , MD will most likely increase dose. Be patient, you are on the right path!!
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Along this same line of increasing the dose... how long did it take people on 15 or 20 mg to no longer have any bald/sticky spots at all? My hair is growing back in most areas (as it did with corticosteroid injections) but there are still a few bald spots. Just curious if anyone has any experience with this :)
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Did you also start with 5?
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Hi patchylatchy, I think many people need 15 -20 mgs to start growth, after growth is established then slowly dropping down to 10 per day is the general plan I see most people stick too. Bear in mind, it’s very individual and even on meds sometimes people get a shed or a patch but usually it resolves with temporary increase of dose.
it is so individual - there are alopecians whose bodies seem hardwired to try and keep the attack on the follicles, which need consistent and often higher dosing, but then some seem to have very severe attacks but once remission is induced can drop the dose down quite low without any set backs, also there are cases where 5mgs is enough from the onset, whereas others need a 20mg dose for up to 6 months before they see progress. My biggest advice, patience is key, slow response doesn’t mean you won’t get a great result, some people don’t see growth for 6-10 months and then it happens, others seem to get results in the first few months- most seem to be in the 3-6 months zone to see results.
I think if your doc wants to start on 5mgs it’s more to do will seeing if your body will manage ok on the Med. For the majority of us, we do quite well, for a very few, it has some side effects. I think doctors need to be risk adverse as a profession (frustrating for us when we just need them to take a chance), so the 5mgs is probably more a cautious starter dose.if you go back through the thread you probably see a bit of a pattern, we start on 10mg, then after 2/3 months with slow or no response we bump up to 15 to 20, around 5/6 months the hair growth starts- sometime just vellus for a month or two, and then all of sudden the hair darkens and thickens and we are well and truely on the way. Sometimes the hair is thinner or curly or just different then before but it does seem to get better over time. Many get a full response, some, unfortunately don’t get 100% back, but often enough to feel more like “ourselves”. I am very lucky that I got it all back and pretty much the same as before, though at the beginning I made peace with myself that if I got eyelashes and eyebrows back I would consider that success, so getting it al back felt like winning the lottery!
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