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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 mastros on
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Sorry to hear that. Hang in there. It's really tough
Xeljanz and Jakavi are different medication. Xeljanz needs a few months in order to know if it works.
The amount of months varies per person and per context. I would give it for sure a couple of months more to see how it goes.
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Thanks for the answer. How long do you think?
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First of all, to make it clear. I have 0 medical expertise and 0 way to be able to predict how much time does it need.
I would try it for 4/5 months if I was in your case, yet I would actively seek the opinion of a doctor specialized in JAK inhibitors and alopecia.
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Okey! Thank you for the help!! Have a good day.
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Hi,
Sorry you're going through this. We all know how difficult and traumatizing it can feel. You're not alone here. At least take comfort in knowing that you do respond fully to Jakavi.
2 months on Xeljanz is too early to judge. The affected follicles can take anywhere from 3-9 months to heal and start regenerating new hairs after an immune attack. So I would give it more time.
Jakavi is JAK 1 & 2 whereas Xeljanz is mainly JAK 1 & 3 so they don't affect the same pathways. Some have better response on one or the other.
I believe Beacon also offers a generic of Jakavi (ruxolitinib) from what I've heard, but I don't know first hand. You could check with them as a contingency in case Xeljanz doesn't work as well. That should put your mind at ease :)
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Thank you for the answer!
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Hey all,
All I've been on 20mg since Feb all my spots just filled in! But the bad news is I just found a new spot that seems active. Anyone ever get a spot at such a high dose?
I think I got it end of June early July searching pictures. I forgot a half a dose 3 times throughout a 10 day period.
Did a pull test a few broken hairs came out but not much... And I did a lot like over a hundred pull tests and maybe 5 came out overall. What is upsetting... Everything else seems to hold up just fine, and got injections. Doctor doesn't seem to be concern, she didn't see broken hairs on my scalp. but I'm hypersensitive.
Anyone have similar experience or guidance?
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I think that is normal my friend. That is incredible results for just being on meds since Feb -6 months! I experienced something similar on my beard and it seems to be gradually filling in. I’d just keep an eye on it and if it doesn’t subside in a couple months see if your deem thinks it acceptable to inject that area. Are you taking generic or Pfizer Xeljanz? Also have you also been on 20mg or did you start air at the standard dose? I’m personally on the branded Pfizer 11mg Xeljanz XR for 4 months now... try not to stress out man
TS
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I was on 15 last year and then lowered my dose in November. I then started shedding and upped my dose to 20. Everything started slowly filling in but I got this spot out of no where. I don't know if it's normal to get AA spots while on a high dose :(
When I started a over a year ago I started on 10mg for about a month and moved to 15. Got full regrowth within 8 months. Then started to lower the dose then went to 20mg 2 or 3 months after.
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Ok. Well I can’t answer that I’ve never been on anything higher than 11mg. Are you taking generic or branded drug? When you got full regrowth at 15mg why did Derm still up your dose? For what it’s worth my doctor said that he hasn’t see any difference when taking patients from 15mg to 20mg dosing. I know how stressful it can be when you see these lesions pop up unexpectedly but you hair looks great and if it looks stable you shouldn’t have to worry. I would definitely see what your doctor thinks about injecting that small area to start seeing that it would be easy and not harmful from a medical stand point.
TS
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Yeah, I don't know why she upped it to be honest. I went from a thick full of hair to about 9 spots and a little less thick hair. If you go back to February on here you'll see. I was pretty active. I am not as active as I am today (work) but I still read everyone's comments.
I am also on the brand but still buy the generic and stick pile in fear that Pfizer will cut me off or generic will run out. It's as if I'm preparing for the apocalypse lol.
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