Where acceptance is all there is
I decided to start a new discussion group for those of us who are taking, have taken, or are thinking about trying Xeljanz. As we all know by now, the medical trials that took place at Yale, Columbia, and Stanford (and, I think another university or two) have demonstrated that Xeljanz helps a large percentage of alopecians. I was told by my Stanford doctor that the success rate is up in the 70-80% range for regrowth. People who have had AU since childhood have gone on to full regrowth (a young friend of mine from this site had that experience and is now focusing on his college studies with a full head of hair). Others with AA or AT have also had great success with the drug. There does not seem to be any correlation between age of onset or whether one's alopecia was genetically with them at birth or developed later as an autoimmune disease (as was my case). Researchers from the trials are now focusing on the individual genetic makeup of patients who participated by analyzing scalp biopsies. Their goal is to try and figure out WHY some individuals respond well to the drug, yet others struggle or do not respond at all.
We also know that drug companies other than Pfizer are working to develop their own JAK Inhibitors that work along similar pathways as Xeljanz, producing minimal-to-no side effects. As we have read in other discussion groups since 2015, few Xeljanz patients experience negative side effects. A rise in cholesterol seems to be the most common among them. Some individuals with other diseases along with alopecia have had different side effects or unexplained relapses while on the drug, but it is hard to figure that out--especially when other medications are used along with Xeljanz for different diseases.
In any case, at the start of this discussion group, I have been on a dose of Xeljanz at 5mg, 2x daily for 2 years, 8 months. I started the drug during the Stanford Trial in February 2015. It works for me.
Our challenges going forward into the future are to keep the lines of communication open as new drugs are introduced. It will likely take a while. And Pfizer has no plans to offer Xeljanz as a treatment for alopecia. For the purpose of marketing and profit, they prefer to keep the drug available only to RA patients.
Let's use this discussion group as a forum to keep each other informed, share if and how one's insurance company decides to cover Xeljanz for alopecia, alert the group to any pertinent research articles or info about new drugs, and most important, support one another in this process. I learned about the first Xeljanz Trial at Yale through posts here on Alopecia World. Had it not been for that discovery, I may have not found my way to the Stanford Trial. I am very grateful for the host of information here and the amazing people I have met along the way.
Here's to a hopeful future ahead!
merci pour tes reponses
es -tu sorti de l 'essal clinique Il2 ? j' avais cru comprendre qu'il y avait des contrôles après 1 an... Le Pr Passeron est il au courant de ton traitement avec Xeljanz? Ce traitement peut modifier les résultats (et donc l'interprétation) qu'aurait eu Il2 seul au long cours.
Tu payes Xeljanz en espèces en Turquie, ils acceptent les euros?
Je suis ravi de tes progrés! Qui fait tes analyses de sang de suivi ? Un laboratoire de quartier? ou l'hopital?
Merci encore pour tes réponses
CTP-543 has been fast tracked by the FDA - might end up being the first treatment approved for alopecia: https://www.naaf.org/news-room/fda-grants-fast-track-designation-to...
I was (very briefly) in the trial for this drug. I lasted less than a week. I should mention I'm very sensitive to drugs - I usually have to take a half dose of medication, which isn't an option in this trial, so it may have affected me more strongly than it would others. Those first two days on it I felt awful. Very awful. I shouldn't have been driving to work and I definitely should not have been at work. Fatigued as hell/massive headache/ dizzy dizzy dizzy. The second/third day my lips became numb and I stopped taking it as this can mean an allergic reaction. My brain felt sluggish. My lips were still numb a day after I stopped taking the medication. I decided not to take it again. The next week I had a tooth infection and needed a root canal. I guess it's possible that the numbness was caused by the infected tooth pressing on nerves but I'll never know for *certain* unless I tried the medication again. But I got spooked and probably won't! XD
Now, I'll admit I've NEVER taken any serious medications before - maybe this is what starting medications feels like and my body would have gotten used to it? Is that everyone else's experience (that you feel like you got hit by a car) when starting Xeljanz??
Sounds like the culprit could have been the tooth infection.Thats how I got when I needed a root canal..Six months before I started xeljanz I got deviculitis if I started xeljanz six months earlier I probably would have blamed the medication because it can be side effect.Wonder what fast track means one year or five.
has anyone here got androgenetic alopecia also, or just androgenetic alopecia and tries xeljanz?
I recently stopped xeljanz and most of my hair fell off after 2 months of stopping. I've gotten back on the medication (been a month in) and I think shedding has slowed down a little bit (not stop fully though) - just wanted to get feedback on whether others have had this issue and if so, if regrowth happened in your case. Let me know, thanks!
Well over the last 6 months since Xeljanz was rejected by my insurance, I decided to try methotrexate, since that was the quickest route to get it approved (MTX, or try two biologics).
I had an allergic reaction to MTX after 4 weeks of taking it - itchy rashes all over my chest, stomach and back. Fortunately, this meant my doctor's next appeal for Xeljanz was approved.
I was so giddy to have it in my hands, and so happy to finally see if it would work for me. However, I had a (possibly allergic?, but certainly adverse) reaction to the very first pill. Within an hour of taking it my arms went completely numb and heavy, and my lips also became numb. This is the same reaction I had to another jak inhibitor, CTP-543, in the current drug trial and which caused me to drop out. Apparently, this is a pretty rare reaction to jak inhibitors, and the study investigators as well as my current doctor have no idea why or what could cause it. Maybe underlying MS was triggered like with Humira? The numbness peaks and lasts for several hours, fades, and disappears completely after 3 days. Would this side effect disappear after continuing medication for a longer period of time? We're all (doctors and myself) too freaked out to try! Haha! This means any and all jak inhibitors are likely off the shelf, for me.
So crushed, right now.
Next steps? Guess I'll look into seeing if insurance will cover secukinumab/Cosentyx or PDE4/apremilast. Neither have the success that Xeljanz offers, but are more selective in targeting IL17a, and PDE4 , respectively. Though I think IL23/Stelara would be more successful, it's one of the most expensive drugs in the U.S for treating psoriatic arthritis (PsA - what I'm trying to treat alongside AU) and likely wouldn't be covered by my insurance.
Hopefully I can try one of these, without strange and mysterious neurological side effects. :/