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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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Yes, you are correct here, Jen. As I shared, when I got a little careless and skipped some doses, I had a small relapse. There is a woman who posted a brave account on Instagram of her experience stopping Xeljanz due to financial burden. She photographed the hair loss that resulted--going from full regrowth back to nearly total hair loss. Dr. King has stated that stopping the drug will likely result in full relapse. Those of us on Xeljanz are well aware of this.
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Permalink Reply by Jen on
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I answered that because DamienFaust asked and you didn't include that info in your responses.
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Permalink Reply by LauraL on
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Hi Susan,
Uncertain if this thread is still active, but I was hoping to connect with you/the group. I have AU and am a patient of Dr. King's - I had been on Xeljanz for about 2 years, seeing complete success within the first 6 months or so. I am currently pregnant, expecting my first child, and as a result, have stopped Xeljanz.
I am experiencing significant hair loss, which is extremely difficult, to say the least. I am afraid that my sadness and anxiety are casting a shadow over what should be, a happy time for me.
I have had a hard time finding others, other examples, other literature out there about people like me who have had success with Xeljanz > had to then stop treatment > and who then resumed taking it again.
My baby is due this coming June and I expect to start to Xeljanz after I deliver. I hope to still have some of my hair then, but it's been falling out very rapidly and I am afraid. :(
But, what I am most fearful of and most curious about - Is whether when I start Xeljanz again, post-pregnancy, if it will work again? I suppose if it worked for me the first time, it will again. But I just don't know.
Does anyone out there know? Has anyone out there been down a similar road?
Thank you, Susan & thank you to all of your out there for sharing your stories and journeys. You are very brave. Trust me, I know.
xo
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Permalink Reply by Kristin on
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Omgosh, I want to connect with you about this!
I haven't posted an update, but I stopped Xeljanz (was on for a year) in January and have since lost almost all of my hair. The reason I stopped was because I want to get pregnant with in the next year or so and didn't want Xeljanz in my body.
I'm having a surprisingly okay time adjusting. I got a few new wigs and am feeling like myself.
My doctor is pretty confident that the Xeljanz will work again once I decide to go back on it!
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Hi Laura—
Thank you SO much for sharing your story here. Your experience is unique, and it is one that will be valuable to so many of us who are using Xeljanz.
It it is no surprise that your hair is falling out since you discontinued using Xeljanz during your preganancy. Dr. King has stated that one can expect a relapse if the medication is halted. As I documented over a year ago, just reducing my dosage (or missing some doses in a short period of time) triggered a small relapse. It actually happened to me twice. In both cases, I was under a lot of stress, which may have exasperated the problem. Once I was back on track with my medication dosage and got my stress under control, the relapse spots grew back. Currently, I have full regrowth again.
I cannot guarantee that your hair will grow back when you resume taking Xeljanz after you give birth, but you should be hopeful about that, yes? What did Dr. King tell you? You are the first person I have read about who stopped the drug due to pregnancy, so your story is well worth documenting! Please consider opening your own discussion page here on AW to document your journey of losing hair throughout your pregnancy and what comes after. Your transparency and emotional response to this experience will help so many. It was precisely why I started my first discussion page when I began the Xeljanz Trial at Stanford. I had no idea if my hair would grow back, but I wanted to document my experience regardless of the outcome. I hope you choose to do the same because knowledge is power!
I wish you a happy and healthy pregnancy. You are doing a truly beautiful thing, and the stress will be greatly overshadowed when you first look into the eyes of your baby for the first time. PLEASE keep us all updated here and on your own page if you decide to open one. Do not hesitate to contact me personally, as I have 3 daughters and will offer you any advice you may seek. You are a strong woman! You got this!
XO
Susan
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Thank you for very educational and detailed information. You are so knowledgeable. Do you know any topic cream is available?
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There is a topical Xeljanz cream that doctors order from
One pharmacy in Philadelphia ( one of the only places that makes it). I tried it when I had a small relapse back in May 2016. I did not see any affect. Once I got my stress levels under control and made sure I did not miss any doses of my pill, I saw the relapse spot start to grow back within a couple months. I also had Dr. Madkan do Cotisone injections to that relapse spot, and it grew in quickly and fully. I've been okay ever since. In my opinion, the cream was a waste of time and money.
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is it possible for someone ask dr.king why we xould not stop the drug?how could we maintance the result?
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Wow you look great. I'm totally gutted this drug is not available in the UK. I can't understand why.....
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Hi Susan,
This is my first time on here. I started losing my hair in August and now my scalp is showing. I’m 36 and I am completely devastated. It feels like my identity has been taken from me. Prednisone and shots aren’t working. How can I try this medicine? Please help
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Permalink Reply by Suzie on
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Tryingtocope, How long have you been on the shots (I'm assuming you are going to a dermatologist)? Have he/she offered other things as well like Minoxidil and some kind of prescription foam or creme as well? I wil tell you that it takes a LONG time to see any kind of growth with the shots, so 2 months really isn't giving it the time it needs. Also, have you been properly diagnosed? If so, what form of Alopecia do they say you have?
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