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Xeljanz Users...Let's Stay Connected Here in 2016!
I want to thank so many for following my discussion link, "My Stanford trial experience, Part 2 (Xeljanz)" throughout the bulk of 2015. I began participation in the trial in late January, got my first RX for Xeljanz in February, and started to see the first signs of regrowth 3 1/2 months in. After the trial ended, I opted to stay on the drug, and now I am a post-trial patient for the doctors at Stanford. I will continue to fly up there from Los Angeles once every 3 months or so to provide them more data with the hope that maybe the FDA will one day approve Xeljanz for alopecia! As long as my bloodwork remains healthy, I anticipate staying on the drug for the forseeable future. I have had no negative side effects on Xeljanz since I started. If anything, it has calmed down my overactive immune system and possibly helped settle some food sensitivities I had been developing last year.
I am starting this discussion because I really hope those of us who are currently on Xeljanz (or are about to begin) will want to keep tabs on each other. I have read some posts on other links where patients stopped or reduced the drug, and their hair began to quickly fall out. However, I DO know that alopecia can go into remission. It did for me from early 2009 until the end of 2012. Four years of spontaneous remission! With no drugs. I hold onto hope that Xeljanz may help push some of us into remission, allowing us to taper back on the dosage for some time without devastating relapse. Maybe that's not in the cards. In any case, we are the lab rats right now! So, we need to look after each other and share our stories--whether they are good or bad. My attached photo shows me a week ago--12/15/15. I will continue to post more photos as time goes by. Please all do the same. Let's band together in 2016 and get some viable treatments approved for this cruel disorder!
XO
Susan
Replies to This Discussion
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Permalink Reply by Suzie on
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I also was nervous about the weight gain, so I immediately bought a used treadmill and have been using is tremendously and so far gaining weight hasn't been an issue for me. I've had AA as a teenager and it all grew back on its own a year later......then at age 26 developed RA after my 2nd child.
Never knew I had AA until about 4 years ago (going through menopause as well, so that can't be helping the hair loss) when I had a large bald spot on the back of my head. My hairdresser said it looked like Alopecia. and I had no idea what it was. I googled it and OMG what an aha moment for me. I had continuous shedding and numerous bald patches. Tried steroid injections with a dermatologist and some of the patches filled in and others were stubborn. Did extensive research and read about Xeljanz. Approached my RA doctor and he put me on it to try and help both the RA and AA and so far it has helped with both. I have my good days and bad days with the RA, cause honestly, no matter what drugs I take, we all know there is NO CURE!
Once again, looking forward to your new discussion page.
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Permalink Reply by Susan McAdams on
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Glad to hear the medication is working for both of your medical conditions!
An update on my weight gain issue. About 6 weeks ago, I had bloodwork done with my regular doctor. What we found is that my thyroid has slowed down a bit—still within the range of normal, but enough so in the past year (since I last had blood drawn) that she suggested I start taking a low dose of thyroid medication. Not the synthetic kind because she said that form has been known to cause problems with patients who have an autoimmune disease.
Anyway, in the past 6 weeks on this new med, as well as being a lot more vigilant with my diet and exercise, I have managed to drop 5 pounds. I am 48 and not pre-menopausal from what we can tell, but it’s tough to determine if the thyroid slowdown is due to age or may have happened because of the Xeljanz. Maybe a combination of the the two. Hard to tell. But, I’m on the right path, I hope.
I’m curious to hear from anyone who is younger who may have had a thyroid slowdown. Again, it is only in recent months that doctors have acknowledged that weight gain MAY be a side effect of Xeljanz. If anyone has anything to share in this matter, please do!
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Permalink Reply by Kristin on
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I'll get bloodwork again in January and bring this up with my doctor then. I'm curious about it too since I'm at my heaviest since taking Xeljanz.
I'll keep you posted!
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Yes, please keep us all posted on your results. The more info we can share, the better!
—Susan
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Permalink Reply by Bubbles on
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Hi Susan, I friended you about a year ago. I hope you remember me. I live in Houston and am looking for a doctor in this area who will prescribe Xeljanz. My hair Loss has become dramatically worse......I have now lost over half my hair. I so wish I had started sooner, but kept hoping and praying that it would reverse and stop shedding and start growing again. I was badly mistaken. How should I approach any doctor about prescribing this medication?
Your suggestions will be greatly appreciated.
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Hi, Susan,
I wonder if your dermatologist talked about concert and Aclaris are making new kind of jak inhibitor with better safety profile. Why they are safer?
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I've tried taking just 1 Xeljanz a day instead of 2 because of stomach issues and have noticed more hair loss. My patches all filled in well since on Xeljanz for a year, but I never gained the thickness and I'm wondering if I ever will. I went to a new dermatologist and just had a scalp biopsy this morning to confirm what type of Alopecia I have going on now....is it still AA or possibly Menopausal since I'm 52. All I know is that since I had AA 4 years ago, I had not only bald patches, but lots of thinning. I'm back on 2 Xeljanz a day and waiting to see my results of the biopsy to see my course of action. I'm seriously ready to get a hair topper for the thinning on top and sides.
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I'm dealing with the same sort of thing. Have been on X since October 2015, went up to 3 / day in December 2015 and been on that dosage up until recently (now alternating 3 or 4 per day). I was very patchy AA all over my body - eye brows have almost entirely filled in, eye lashes completely back, facial hair pretty much all back, and scalp is much less patchy though a few spots that are pretty sparse (notably crown of head and frontal hairline). I'm a 31 year old guy so can go out in a public without putting on any topper and still just look like a balding 31 year old guy; but, I'm pretty sure the sparse areas aren't due to aging. Some of those spots have very gradually filled in over time. It also seems to be a fairly common observation of some people on here that their hair isn't as "full" when it comes back. Some people have found that cortisone shots and steroids gave them a little boost and helped things fill in.
Separately, the good news is that there seems to be a lot going on in the research community for AA utilizing JAK inhibitors, both topicals and systemic. I think a couple of studies are expecting Phase II results in the first half of 2018. This condition can be so discouraging but for the first time in the last quarter century I've had AA, there's reason to be hopeful!
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In my case, I learned about a year and a half ago that if I reduced my dose (2 5 mg pills per day), it was not a good thing. I had not even done so consistently—I had been really busy at the time and missed a dose here and there. And, I ended up with a small relapse—a patch near the front of my scalp. I quickly became more vigilant and made sure I did not miss any doses after that, and soon the patch grew back in. Monthly Cortisone shots helped it grow in quickly. And, my doctor decided to inject a small area in the bottom back that had not grown in with the Xeljanz. Miraculously, that patch finally kicked in and her back as well!
I have always had very fine hair, and I did not notice a difference in hair texture or fullness after my hair all grew back from the Xeljanz. But, I think there is validity to the thinning aspect due to age—especially for women in menopause or after. I’m not at that place, yet, but it may happen down the road. Again, I don’t think that has much to do with the Xeljanz or my Alopecia. Just the natural course of things.
With that said, there are several Xeljanz patients who do not get 90-100% regrowth. Some do not respond at all. That’s why doctors in all the trials took scalp biopsies on patients so that they could analyze differences on the cellular level to help predict who may or may not respond to Xeljanz treatment.
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Honestly, I really don't know what's "normal" any more for my hair. My hair was also on the thin side to begin with in the front and sides, but I remember for some reason before my AA that my hair seemed fairly thick in the back and the front and sides were normal. After the AA developed over the last 3 years, it thinned out drastically and had to have extensions installed to cover the patches that were giving me a hard time coming in. I really wish I knew if I didn't have AA what my hair would look like today. Did I just happen to develop the AA and then hair loss due to menopause at the same time 4 years ago? Or was it just AA with shedding? Or AA 4 years ago and now androgenic alopecia now? I'm really beyond frustrated!
I am hoping this biopsy will give me some insight as to what is really happening with my scalp now. This new dermatologist recommended me using this shampoo called KETOCONAZOLE SHAMPOO. Have any of you tried it? It's mainly used for people with dandruff, but it is also used for people with androgenic alopecia and many people have had success with it. After my biopsy heals in a week or so I will then begin using it (once or twice a week is recommended).
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How have you guys battled insurances to get approved? I am currently on Aetna and I'm pretty sure they see the drug for alopecia as a test and must be pre auth. anyone have experience with Aetna and getting xeljanz?
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