Anna
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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 chris_s's discussion New JAK inhibitor - CTP-543 by Concert Pharmaceuticals
"Hey mtran2000 - I took Xeljanz for a year and did not respond at all - and had no side effects. I have now been on Jakafi for a year and have full regrowth! But I do have side effects - weight gain, high cholesterol, and fatigue. I now take a statin…"
Jul 29
Anna replied to NicoleT's discussion Xeljanz from India
"Not sure - the person I was asking for is going to make his own inquiries so I will let you know what he finds out! It does seem incredible."
Jul 27
Anna replied to NicoleT's discussion Xeljanz from India
"Wow thank you SO MUCH Carlie!"
Jul 27
Anna replied to NicoleT's discussion Xeljanz from India
"Hey Carlie - Xeljanz was available from Costco in BC????? For real?"
Jul 27
Anna replied to NicoleT's discussion Xeljanz from India
"Thank you yp that's super helpful - I appreciate it!"
Jul 27
Anna replied to NicoleT's discussion Xeljanz from India
"Any Canadians who order from Beacon or elsewhere>? 1. Do you need a prescription? 2. How does it work at customs? Appreciate any help!"
Jul 27
Anna replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Canadians who buy from Beacon: (asking for a friend) 1. Do you need a prescription to order tofacinix? 2. What is the protocol for getting the shipment through Canadian customs? Appreciate any help you can give - thank you so much!"
Jul 26
Anna replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"So glad to hear this!"
Jun 22
Anna replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi ariel015, I wouldn't think taking methotrexate at the same time would prevent you from upping your dose, but obviously your doc will make that call. I did not have any side effects with Xeljanz at all, though I DO have them with ruxolitinib…"
May 26
Anna replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi ariel015, A few things to think about: 1. Many people take months and months before responding - Dr. King believes that a good 20% pf patients don't respond in any meaningful way until at least 6 months in - you are still well within that…"
May 24
Anna replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hello - Has your daughter ever tried increasing the Xeljanz dose? Sometimes patients need a higher dose to really get the growth going, and then can eventually taper off a bit. Many people on this forum have gone up to 25 mg without any harmful…"
May 21
Mike left a comment for Anna
"Anna i am in Ont, please call me 519 829 0754 tx"
May 15
Anna and Mike are now friends
May 15
Anna replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hello Canadians, I have three unopened bottles of Xeljanz (I stopped treatment as I didn't respond) that I would be willing to mail to anyone in Canada whose tofacitinib supply is uncertain at the moment. I would hate for the meds to go to…"
May 15
Anna replied to Cstarr's discussion Xeljanz and weight gain?
"Hi there - I too have had horrible weight gain from my JAK inhibitor (I am on ruxolitinib, not Xeljnz - Xeljanz did not work for me). I am fully 20 pounds over my usual weight (which I maintained for 48 years before I went AU) AND I have high…"
May 11
Anna replied to Patchylatchy's discussion for alopecia universalis general questions
"I am convinced that menopause triggered the AU - it's too coincidental not to have. Apart from the AU, I did have some hot flashes and night sweats, but that's it. I am on HRT as I reasoned that it might help rebalance my hormones to help…"
May 8

Profile Information

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

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At 2:56pm on May 15, 2020, Mike said…

Anna i am in Ont, please call me 519 829 0754 tx

 
 
 

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