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For those of us on ruxolitinib (for whom Xeljanz did not work)
Hello,
I became AU at age 48 in June of 2017. I have been very active in seeking treatment, and have tried just about everything out there. Xeljanz did NOT work for me at all - and I was on for 11 months at very high doses - and neither did dupimulab. However, after 7 months on ruxolitinib now (25 mg BID) I am FINALLY seeing some growth, and my fingernails and toenails are much better. I have seen several specialists in the US (I am Canadian) Including Drs. King and Bordone, and they both have said that mine is pretty much the most severe case of AU they have ever seen.
The purpose of this thread is to give hope to those who have not responded to Xeljanz, as I never thought I would get anywhere after so many disappointments AND to share information and experiences for those of us who take ruxolitinib.
Having taken both Xeljanz and ruxo, I can say that for me, the ruxo is MUCH harder on my system. I had no side effects with Xeljanz to speak of, but with ruxo I have extreme exertional fatigue (can't hike up a mountain like I used to or run at all), high LDL and triglycerides (I am now on a statin as well). and pretty bad weight gain.
Hoping these side effects wane after time.
Anyone else here on ruxolitinib? I would love to hear from you!
Anna
Replies to This Discussion
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Permalink Reply by Football fan on
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Not responding very well to xeljanz giving it a couple more months if no improvement going to switch to barcitinib.Did you start the ruxo immediately after stopping xeljanz?Also is that the low or high dosage I also had weight gain on xeljanz. frustrating I’m so careful about everything I eat.How were you able to get the ruxo I know it’s very expensive?Im like you I got Alopecia in middle age a few years after I developed a thyroid problem.I had so much stress in my 20,s and 30,s and it never affected my hair.Good luck and I hope you get all your hair back
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Hi Football fan - I feel your frustration - you see just about everyone else responding but not yourself. I waited 6 months between ending Xeljanz and starting ruxo BUT that was only because I decided to try dupimulab before the ruxo. Dr. King would have had no problem starting me on the ruxo immediately after stopping Xeljanz and I wish I had done that because I would be over a year in at this point! I am on a fairly high dose of ruxo - I don't think docs usually prescribe much over 20 mg twice a day, but I am on 25 - and when I changes doses I even went as high at 35 mg twice a day on my won with the leftover meds from the lower dose prescription (though my doc doesn't know this yet).
I managed to get my insurance to cover the ruxo. I built up a huge file for them with letters from doctors, all of the scientific papers on ruxo, and a letter from a psychologist who wrote about the profound psychological effect of the AU on me. My insuarnce agreed to cover the meds for a year, atwhich point I will have to reapply for coverage but I am assuming that if I can show them regrowth they will agree to continue coverage. I have to admit my insurance company has been pretty great all through this ordeal -they have covered all three experimental drugs I asked them to, I know I am very lucky in that respect (and also lucky to be Canadian).
If I get my hair back the weight gain will have been worth it but I;m not gonna lie, it;s pretty awful I've always had no rouble with my weight, and now no matter how well I eat I just can't shift any of these extra 15-20 pound that I put on with the drugs. The high LDL and triglyceriseds worry me too as if they continue to climb my doc will take me off the meds. I get my next blood test next week to see if the statin has helped bring them down.
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Thank you for your help.keep us posted on your progress
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