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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 Susan McAdams on
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I'm glad you guys are bringing up the issue of WEIGHT GAIN. When I first went on the drug in 2015 during the Stanford Trial, I asked Dr. Ko if weight gain might be a side effect. He told me no. Over the past two years as I continued to make quarterly visits up to Stanford to see Dr. Ko, I would ask him each time about the weight gain issue. He kept telling me that the research does not support it.
The other day, I did a Google search and found a recent article (March 2017) where Dr. King from Yale discusses the effectiveness of Xeljanz. Suddenly, he states "acne eruption" and "weight gain" are possible advise side effects of the drug! Reading through other medical sites, I found dozens of Xeljanz patients complaining about "rapid weight gain." I disregarded those patients who are on other medications for RA and other autoimmune diseases, but several who are on Xeljanz alone complain about this problem.
For the first 18 months on Xeljanz, I did not detect any weight gain, but in the past year, I put on 10 pounds quickly. I originally attributed it to a lot of stress I was under while finishing a design certificate at UCLA. But even during that time, I was working out like crazy, yet the weight kept adding on. Since late June, I have been working with a trainer to get this weight off, but to no avail. I had blood work done last month and found that my thyroid is functioning slower than it was a year ago. Still in the range of "normal," but a significant enough change that my doctor put me on a low dose of thyroid medication to rev it up and boost my metabolism. I have my calorie intake down to 1400 calories per day, which is pretty low for a 5'8" woman with a lot of muscle mass. In the past 4 weeks, I have lost about 4 pounds, so maybe the drug and calorie drop is helping. But, it requires major discipline on my part. One cheat day, and I lose progress!
Anyway, I am curious about your stories here and what any of you may be doing to combat weight gain. It's really frustrating for someone who has been an athlete her whole life.
Here is a link to the article I found where Dr. King mentions weight gain as a side effect:
https://www.medscape.com/viewarticle/876855
--Susan
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Permalink Reply by Moonbeam on
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Thank you for posting this. I wish I could get Xeljanz - my dermatologist and rheumatologist don't seem to want to pursue that for me (have an HMO).
However I'm going to start a trial soon investigating the efficacy of CTP-543 (form of ruxolitinib), though I might get the placebo, and for 6 long months. ;) A little worried since I have other autoimmune stuff going on besides alopecia.
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Hi moonbeam please keep us up to date on that trial for Ctp-543. As I have heard good things about it.
Kind regards
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I will singh!
I was hoping to reach out here and see if anyone else is on the trial - there are only about 90 of us across the US but our community is so small so some may be on here (maybe a separate post).
I've done so much research on JAK inhibitors and other treatments that are coming down the line. For the theme of this post, looking ahead to the future, this article is one of the best I've read - it outlines all treatments that are currently being studied. I'm most excited about the selective JAK inhibitors. Ruxolitinib inhibits JAKs 1 and 2, but JAK 2 is involved with so much, including hematological processes the body really needs, I really don't think messing with it is a particularly good idea (haha, but I'm on this trial anyway). Okay, but I'm rambling, here's a link to the article:
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Thank you moonbeam ! There are people on it or starting it, but seen it posted some where on ADML post. Message on there. Probably get a quick response. Fingers crossed
Kind regards
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Hi singh,
I'm not familiar with the acronym ADML - what is that?
Thank you.
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Hi moonbeam sorry just realised your reply. It is another thread on here on xeljanz. It’s the top thread. And has lots of information on xeljanz.
Kind regards
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Thank you for the article. And yes--stay away from JAK's that work on Pathway 2. That has been highly attributed to blood diseases--anemia and worse. Researchers are trying to develop a JAK that is even more selective than Xeljanz which runs on Pathways 1 & 3. Not sure which is better. But, 2 is a problem.
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Just because you have an HMO should not keep your doctors from denying you Celjanz--especially if you also have RA! You need to fight that, and find other doctors on your HMO plan and talk to them. That's total bullshit.
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from my understanding,what we need is jak1.2. That is ruxolitinib.
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No. Pathway 2 is the dangerous one. It has been linked to blood disorders like anemia. Check up on past reasearch results for rux. Several patients on the drug have developed blood disorders. I was told this by Dr. Ko at Stanford, as you know, I did the Stanford Trial and continued on as a post-trial patient so I could gather as much info as possible. Right from the start, we discussed the 3 main JAK's out there. And he told me he would never prescribe rux because it runs on Pathways 1 and 2--with 2 being the trouble spot. Tofacinitib (Xeljanz)is on Pathways 1 and 3. There have been very few side effects. From what he knew, drug companies who are trying to develop their own JAK for Alopecia are trying to weed out pathway 2. I really don't know why doctors are still prescribing rux while knowing the risks on pathway 2.
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