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Quitting Xeljanz due to ineffectiveness
I have been on Xeljanz for over 2 years. I started at 5MG twice a day and then went to 10 MG twice a day. Aside from some improvement in fingernails and a little body hair (none on the head) Xeljanz has not worked for me.
I am going to see my doctor once a year to see if anything new comes out as there are some things in clinical trials. Also, I am going to keep reading this forum to see if others are having success.
Has anyone else given up on Xeljanz and waiting/hoping for something else to come out that will work?
Replies to This Discussion
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Permalink Reply by Tamera on
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My hair status when I started Xeljanz was 60% bald on my head....no eyelashes &very sparse eyebrows no other body hair. The regrowth took about 4 months into the Xeljanz. I was 37 when I started Xeljanz. I did continue my injections, prior to Xeljanz I tried Methotrexate with 0 results....I hope this helps
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Permalink Reply by Anna on
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Hi all - wanted to jump in here as I too did not respond to Xeljanz AT ALL, even after 11 months of dosages up to 60 mg. Nothing. Not one single vellus hair.
I am so happy to be able to to tell you that after 9 months on ruxolitinib (Jakavi) I have about 90% regrowth! All of my lashes and eyebrows, and most of my scalp (just a couple of stubborn areas that are taking longer to respond).
Side effets on ruxo much worse than on tofa - high cholesterol (I have to take a stain now), fatigue, and very stubborn weight gain (I was slim my whole life without trying and now I am twenty pounds heavier).
BUT I HAVE HAIR. Let me know if you want more details.
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Hi Anna.
Mum surprised your dermatologist agreed to such high levels of tofacitinib?
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Hi. Anna.
It’s such an interesting/ exciting time. I can remember when I lost my hair I googled alopecia and a nothing came up it. It’s been so heartening to see the explosion of treatment especially when you have kids as I do and worry about genetic predisposition. I actually think it’s worth hanging in there and doing something positive and taking medication/ unlicensed drugs in an effort to impact on such a horrible condition.... so I hope - isn't thet such a great feeling - that this works and if it doesn’t then maybe its worth trying something else :-)
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Hi there - I also have kids and sometimes wonder if they will end up with AA (or AU like me) - but then I think, as you do, that if that happens the medical community will have made great strides and they might not have to suffer as we have. I tried EVERYTHING - topical and injected steroids, PRP therapy, methotrexate, cyslosporine, prednisone, topical Xeljanz, oral Xeljanz, Dupixent, and then finally Jakavi - until I found something that worked, and I will never stop harassing the medical community until it starts to take this more seriously.
Have you found a treatment that works for you?
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Hi Anna
i started oral xeljanz now on 20 mg Beacon so not full strength. I have very light vellus on my scalp. And some eyebrows and eyelashes. Don’t know which way it will go but I’ll continue to take it. Where are you now taking that is working for you ?
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Hi Anna. Just read ruxolitinib. I’ll try xeljanz for bit longer then maybe consider barcitinib if no response. Thank God for being able to access Bangladeshi pharmacology
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Fingers crossed for you magmck. It took 8 months for me to get a decent response on ruxolitinib, so please make sure to give it enough time! Dr. King told me that a good 20% of alopecians do not start to respond to JAK inhibitors until 6 months into treatment, which was the case for me. So may people respond quickly that I worry that sometimes people give up too quickly.
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