Anna
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  • Westmount
  • Canada
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  • ALOPECIARUINEDMEANDROBBEDME
  • Shad
  • Carlie
  • Frida Rupert
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Anna's Discussions

For those of us on ruxolitinib (for whom Xeljanz did not work)

Started this discussion. Last reply by Anna Dec 9, 2019. 7 Replies

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…Continue

CALLING ALL XELJANZ NON-RESPONDERS

Started May 28, 2018 0 Replies

I wanted to start a discussion for those of us who have tried Xeljanz but had no results. Many people on this forum seem to do very well, and it is extremely frustrating to be in what seems to be the…Continue

Response time for those who have tried Xeljanz

Started this discussion. Last reply by Anna May 8, 2018. 16 Replies

Hi everyone,I am AU since June 2017 and 13 weeks into Xeljanz. Started at 5mgs twice a day, am now up to 20 mgs twice a day. I have had no response whatsoever, and am getting increasingly discouraged…Continue

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Latest Activity

Anna replied to mtran2000's discussion Anyone tried Ruxolitinib?
"Hey Mark - You know my story - NO response whateoever to Xeljanz, and now 100% response on ruxo after 9 months. Anna"
Monday
Anna replied to mtran2000's discussion Quitting Xeljanz due to ineffectiveness
"Oral Jakavi 25 mg BID (ruxolitinib)."
Feb 9
Anna replied to mtran2000's discussion Quitting Xeljanz due to ineffectiveness
"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…"
Feb 9
Anna replied to mtran2000's discussion Quitting Xeljanz due to ineffectiveness
"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…"
Feb 8
Anna replied to mtran2000's discussion Quitting Xeljanz due to ineffectiveness
"Only did 60 (30 BID) for one month as an induction attempt."
Feb 5
Anna replied to mtran2000's discussion Quitting Xeljanz due to ineffectiveness
"So sorry I only saw this now - I have been AU for three years. One of my doctors (Bordone in NYC) says that ruxolitinib (Jakavi) is way better at growing hair than Xeljanz, so for those who do not reposnd to Xeljanz, I highly recommend trying to get…"
Feb 4
Anna replied to mtran2000's discussion Quitting Xeljanz due to ineffectiveness
"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…"
Feb 4
Anna replied to Anna's discussion For those of us on ruxolitinib (for whom Xeljanz did not work)
"Thanks rob I am all about sketchy drugs :)"
Dec 9, 2019
rob replied to Anna's discussion For those of us on ruxolitinib (for whom Xeljanz did not work)
"Maybe I shouldn't have opened my mouth. I keep forgetting that normal people don't self medicate. Sibutramine worked well for me but it's a prescription drug and I believe it's banned so you would have to buy it from a sketchy…"
Dec 9, 2019
Anna replied to Anna's discussion For those of us on ruxolitinib (for whom Xeljanz did not work)
"Appetite suppressors such as....? I’d love to know!"
Dec 8, 2019
rob replied to Anna's discussion For those of us on ruxolitinib (for whom Xeljanz did not work)
"If you are putting on weight it's because it's making you hungry and you are consuming more calories. Gaining weight usually increases LDL. You may want to look into appetite suppressors or change your diet. "
Dec 8, 2019
Anna replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Shad - take a look at my discussion thread about ruxolitinib!"
Dec 7, 2019
Football fan replied to Anna's discussion For those of us on ruxolitinib (for whom Xeljanz did not work)
"Thank you for your help.keep us posted on your progress "
Dec 4, 2019
Anna replied to Anna's discussion For those of us on ruxolitinib (for whom Xeljanz did not work)
"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…"
Dec 3, 2019
Football fan replied to Anna's discussion For those of us on ruxolitinib (for whom Xeljanz did not work)
"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.…"
Dec 3, 2019
Anna replied to mtran2000's discussion Quitting Xeljanz due to ineffectiveness
"Hi Mark, I was on Xeljanzfor a year at 60 mg a day and got not even one single vellus hair. I have now been on ruxolitinib for almost 7 months at 25 mg twice a day and I am starting to see some actual progress. I would definitely recommend trying…"
Nov 30, 2019

Profile Information

Do you have alopecia?
Alopecia universalis
Are you age 18 or older?
Yes - I am 18 or older

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