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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
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Permalink Reply by Moonbeam on
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Ruxolitinib was developed for people who have blood and bone marrow cancers. The symptoms of these diseases can cause anemia and thrombocytopenia and is caused by mutations in JAK2. Ruxo helps these patients by inhibiting JAK2, but since it is involved in the creation of red blood cells it can also cause (exacerbate) anemia and thrombocytopenia, which makes you tired and dizzy. I think these conditions can be reversed when stopping medication - though also I don't think there is enough research yet on ruxo in healthy volunteers and whether they develop anemia and thrombocytopenia at the rate of those with PV and MF.
Why are both medications effective though? That's why that article is sooo interesting! It looks like the disease markers for alopecia are spread across JAK 1, 2, 3, and Tyk2. JAK 1 and 3 both have "common gamma chains" in which several disease markers are found, and JAK 3 is involved in a lot less of cellular processes than the other JAKs (which is why that one is the most appealing and may lead to a medication with few side effects). Tyk 2 and Jak 2 both have IL23, another important disease marker. Jak 2 had Th1 and I'm not sure if the others do, and so on and so on.
I think finding the right mix of JAK inhibition that targets specific disease markers is key and it looks like many are in development. I'd be more likely to take a medication that inhibits Tyk2 and Jak 3 (from what I've read). :)
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Permalink Reply by Susan McAdams on
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Yes, thanks for clarifying that! I realize my vocabulary while trying to communicate info about Pathways is confusing. That's a really helpful article. I'm going to print that one out since alopecians in LA seek me out from time to time for info. I was wondering back in 2015 when I started the trial WHY some patients would go with rux. Now, I get it that it was developed for certain other medical issues. You're right about the development of new drugs. Dr. Ko said researchers are trying to develop a new JAK that is specific to one pathway (not sure if it is 1 or 3) to possibly reduce side effects even more. Makes sense.
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I think it's more that although I've had joint pain for the last 10 years my rheum. can't figure out why. I've had the same HMO, (same workplace) during that time period. There are only 2 rheumys in our HMO and I'm seeing the best one. :( She's run a bunch of tests - I usually test a low positive ANA titer and speckled which means maybe RA, maybe lupus. On the one hand I'm lucky that it's such a low positive and reflects the low-grade joint pain (b/c it could be worse), on the other it sucks because she doesn't want to prescribe something unless she's certain with a diagnosis. Buuuuut, I'm seeing a dermatologist next month, maybe I can work on that person for Xeljanz, if I bring some of this research with me to the appt... :/
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Permalink Reply by Kristin on
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Are any teaching hospitals in-network on your HMO? If so, I'd recommend to see docs there. Doctors at teaching hospitals are much more likely to listen to you re: new studies.
I've had *bad* experiences with regular private-practice derms who basically told me to give up hope and didn't listen to me at all. They were wrong!
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Yep - all the derms I've seen tell me to give up - ha, not gunna happen. ;D
I'll look around and see, we may have one nearby - thank you for that idea. :)
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Moonbeam--
Make sure you test thoroughly to rule out Lupus. If you are diagnosed with Lupus, be very proactive about getting the right medication for it. I am writing this because I know that Lupus can cause Scarring Alopecia, which actually destroys the hair follicle. That means, no drug will repair that and hair loss from that form of Alopecia is permanent. I have a friend with the disorder. Xeljanz and Rux will not grow back the spots she developed. However, once she got the right meds for her Lupus, her hair loss has slowed down dramatically. So, please don't wait on that!
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I'll ask my rheumy again - I think she tried to rule that out in the beginning. I don't see any "scars" (are there scars?) and well, I suppose if it is the scarring kind it'd be too late by now - going on 10 years AU except for a couple small patches. :)
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So how DO people get insurance to cover Xeljanz? I definitely can't afford it if it isn't covered.
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I have no idea why my insurance covers it. I would never get it if it weren't covered. My derm decided just to try prescribing it and see what happens... insurance covered it, so that's where we are now.
If you can find a doctor who will prescribe it, then it's worth a shot to see what insurance does!
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My rheumy prescribed it for psoriasis but my insurance company declined the request... ;_; So annoyed. They want me to try methotrexate first, or, 2 other biologics first: Humira and another one (can't remember the name) and will only approve Xeljanz if the other treatments don't work (for psoriasis). I'm afraid of methotrexate and don't know much about Humira... she won't prescribe it for alopecia since it isn't an approved treatment.
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if you are in the US maybe you would be eligible for copay...
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