Alopecia World
www.alopeciaworld.com
Xeljanz and Looking Ahead to the Future...
Hi Everyone--
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!
--Susan
Replies to This Discussion
-
Permalink Reply by Moonbeam on
-
I'm sorry to hear this :( Hopefully the current trials Pfizer is conducting will be successful, and the FDA will finally approve a drug for alopecia, that our insurance companies will cover. :/
-
-
maybe i am wrong. we need jak1.2 Ruxo not jak3
-
-
Well just got some biopsy results back from the doc and I have psoriasis - woohoo! Kind of excited. Maybe that means I can get Xeljanz since the FDA just approved it for psoriasis in August.
If not, there are other possibilities from that article I posted in this thread that I'm willing to try - the success rate isn't as high, but it isn't as high for methotrexate either, and some of us seems to respond to that right? Has anyone tried any of these drugs, usually for treating atopic dermatitis, psoriasis, and other conditions?:
TH17/IL 23 inhibitor: "ustekinumab"
TH17 inhibitor: "secukinumab"
PDE4 inhibitor: "Apremilast"
Anti-TNF: Adalimumab (Humira), like methotrexate, seems to work in some people and not others (causes alopecia in some people)
What I like about the above drugs (except Humira) is that they target very specific inflammatory markers. That *might* mean a better safety profile over the long term...
-
Permalink Reply by Susan McAdams on
-
Moonbeam—
What medication did you go with to treat the psoriasis? Is Xeljanz now available to you thru your insurance? I did not realize the drug is now approved for both RA and psoriasis—I had heard it was being considered for the latter, but did not know it was officially approved. It’s just insane that Pfizer will not approve it for AA and AU. :-/
-
-
Sorry I didn't see your response until just now. We tried for Xeljanz and it was rejected by the insurance company (they want me to try methotrexate or, Humira and Enbrel first before approving Xeljanz). My doctor is currently appealing their decision - it's been about 5 months of paperwork and appealing and they may still reject it.
Humira may not be a bad decision for me though, in regards to psoriatic arthritis it could help with that, but it's a gamble on the hair. ;D (See https://jamanetwork.com/journals/jamadermatology/fullarticle/1913664). Don't want to take methotrexate. I'm pretty firm on that. Still curious as well about TH17/IL 23 inhibitor: "ustekinumab". Not as heavily studied as Xeljanz but has helped some with alopecia and is more specifically targeting inflammatory marker IL 23:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5614637/
https://www.jacionline.org/article/S0091-6749(15)01582-1/fulltext?code=ymai-site
IL 23 seems to be key in alopecia: https://www.jacionline.org/article/S0091-6749(15)00931-8/fulltext
-
Permalink Reply by Suzie on
-
Has anyone gone from AA to Androgenic Alopecia? Apparently my AA is under control from taking the Xeljanz, but now I am experiencing Androgenic Alopecia......I'm 52 and apparently its a hormonal thing. What has helped anyone with Androgenic Alopecia?
-
-
Correct me if I’m wrong, but I believe androgenetic (or androgenic) alopecia and alopecia areata are two different diseases entirely. It is why JAK inhibitors are not effective for the former and meds like Minoxodil do little for the latter. There is no rule, unfortunately, that prevents someone from having both diseases.
-
-
Yes, you are correct Susan.....apparently my AA is under control, but now I have androgenic and I just wanted to see if anyone had any medicines or all natural products that worked for them. I also have RA, so I am continuing the Xeljanz.
-
-
Hello Susan two months to 10 mg what do you think of my progress compared to yours and others? am I in good progress
- Attachments:
-
-
IMG_20180418_213506.jpg, 1.8 MB -
IMG_20180418_213525.jpg, 2.1 MB
-
IMG_20180418_213545.jpg, 2.8 MB
-
-
-
I am happy for you. Appropriate entertainment can relax and it can also relieve fatigue and stress. Therefore, many companies recommend that employees work for a few hours to properly relax and relax. In particular, on weekends, they can run and sing and relax.
-
Permalink Reply by macdev on
-
bonsoir à tous
Kévin
Comment va -t-on analyser tes résultats (je parle dr Pr Passeron par exemple) avec IL2 alors que tu as commencé un nouveau traitement avec Xeljanz?
Peux tu me rappeler comment tu t'es débrouillé pour obtenir Xeljanz en Turquie, quelle pharmacie , à quel prix et ton "ordonnance de France "
merci
-
-
Mon analyse de sang va bien niveau du il2 , j'ai eu une amélioration de mes ongles et cheveux mais une légère repousses. Donc 1ans après il2 j'ai décidé de passer à xeljanz je paie 425euro la boîte j'ai de très bonne repousses au bout de deux mois . J'ai pas d'ordonnance mais un mot de mon dermatologue qui stipule que je suis en traitement xeljanz et en aucun je dois interronpre cela est pour la douane française si je me fais contrôler j'ai acheté 12 boite il ya deux jour . Pharmacie rebul Istanbul demander memet il parle français.
© 2024 Created by Alopecia World.
Powered by
