Anna
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  • Canada
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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 and Fred are now friends
Tuesday
Anna replied to deveze marc's discussion traitement AA .... par transfert micro biome intestinal
"Je crois que l'essai aura lieu a New York - quelqu'un a deja poste le lien. Il s'agit d'un transfert de matiere fecale d'un patient sain a un patient avec AA...."
Tuesday
Anna replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Lori - it can take up to and beyond 6 months for the JAKs to kick in for sure. I would absolutely stick with it, and if you can work with your doctor to increase the dose now would be a good time to do it. Do not despair - it can take many many…"
Mar 26
Anna replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Superbly well put, as always, Frida - thank you :)"
Mar 13
Anna replied to berg's discussion New York Fecal Transplant for Alopecia Study
"Thanks for this - I am super interested in this study, as any treatment that does not involve expensive drugs with lots of yucky side effects is hugely attractive!"
Mar 7
Anna replied to mtran2000's discussion Anyone tried Ruxolitinib?
"Thanks Kevin - I appreciate the positive thoughts, and fingers crossed that Dupixent works for you. I will definitely try to lower my dose to a maintenance dose in the hopes that the side effects will decrease. Not ready to start that process yet -…"
Mar 7
Anna replied to mtran2000's discussion Anyone tried Ruxolitinib?
"Salut Kevin - Dupixent n'a pas marche pour moi du tout. Je l'ai pris pendant 4 mois... rien.. La seule chose qui a produit des resultats pour moi c'est ruxolitinib - je le prends depuis 10 mois et j'ai repousse 100% de mes…"
Mar 6
Anna replied to hb4lthr's discussion Xeljnaz Coverage
"Ho there - I would suggest you take a look at the very long Xeljanz discussion thread - a lot of people on there purchase generic tofacitinib from a pharamceutical company in Bangladesh called Beacon, I believe."
Mar 4
Anna replied to mtran2000's discussion Anyone tried Ruxolitinib?
"No - in between Xeljana and ruxo I tried Dupixent. I did not taper when stopping Xeljanz. My opinion (based only on my experience and discussion with other patients - I am not a doctor!) is that there would be no need to "take a break"…"
Mar 4
Anna replied to mtran2000's discussion Anyone tried Ruxolitinib?
"Good luck - keep appealing!"
Mar 1
Anna replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi there - I think I am the friend Frida is referring to :). I was extremely lucky to have my insurance cover the ruxo, as there does not seem to be an assistance program for it and it is much more expensive than Xeljanz. I did have to make a case…"
Mar 1
Anna replied to mtran2000's discussion Anyone tried Ruxolitinib?
"Hi there - I went up to as high as 60 mg Xeljanz for  a couple of months - in total I was on Xeljanz for 11 months, mostly at 50 mg (25 mg twice a day). I did not repsond at all - and when I say not at all, I mean not at all. Not one vellus…"
Mar 1
Anna and Jessi are now friends
Mar 1
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"
Feb 24
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

Profile Information

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

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