Alopecia World
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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 Tryingtocope on
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Hi Suzan,
I’m even worse now than I was when I wrote this comment. I’m losing so much hair and I’m so scared. All I do is cry and I’m having severe panic attacks. This has ruined my life and robbed me of my identity. I’m so frustrated because I’ve seen 3 dermatologist. One said Alopecia Areata, one said Telogen Effluvium, and one said trichotillomania. The MOST frustrating part about it is that my biopsy came back trichotillomania but I DO NOT pull my hair out. I’ve known my dermatologist for many years so he said it may have come back like that because as the hair was falling it was getting tangled and I was brushing the knots out too hard or something. In any event he says it’s Alopecia Areata and the shedding just won’t stop. I’ve quit my job because of this and mentally it is destroying me. I have two children and can’t be the happy mom I want to be. This is ruining my life
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Permalink Reply by Kristin on
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I’m so sorry that you have to go through this. It’s incredibly hard and all of us on Alopecia World have been there.
When I️ was 15, I️ was also misdiagnosed with trichotillmania. No one believed me that I️ wasn’t pulling my hair out, not even my parents, so I️ totally understand.
Part of the process of alopecia is accepting being bald. It’s so hard, but you can do it. Message me if you want advice on wigs. I️ have a pretty great collection and know-how!
I’ve said this before on here, but find the closest teaching hospital and see a dermatologist there. Ditch those docs who misdiagnosed you and don’t look back. Print an article about Xeljanz and bring it to your appointment, if you want to go that route.
But you’re not alone. We’ve all done this very thing and it’s so so hard.
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it makes me laugh people give their news when their hair falls but when we ask for news there are more people I speak for most not everyone
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Hi everyone,
I have been on Xeljanz for about 2 years now. I have been taking two pills daily for a year - I have complete re-growth, including lashes and brows. Starting in January, my derm wants me to decrease my dose to one pill a day, and eventually one every second day. He seems to think by then I will be in "remission" and that I will be able to maintain my hair. I am hesitant, however I know I will not be able to stay on the drug forever, especially when I have children, etc. So, as fearful as I am, I think I am in a good place to lower the dosage and see what happens. I will keep everyone posted!
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Permalink Reply by Suzie on
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Xeljanzgirl....I too, have been on Xeljanz about 1 year. I had several patches and thinning. A lot of my patches were coming in BEFORE Xeljanz from the injections, minoxidil, etc. I was using, but some of the patches just weren't responding. I also have RA, so I had my Rheumatologist put me on Xeljanz. It seemed to stop the thinning and my patches have all come in. About 2 months ago I started developing some stomach issues so I asked my RA doctor if I could go on 1 pill a day and he said I should try it. Well, the shedding seems to have started again and I have seen some new loss. The RA seems to still be ok with the 1 pill, but not my hair. I went to a new dermatologist to see about steroid shots and she is wanting to do a biopsy to see if I have another form of Alopecia going on, as if AA wasn't enough. I'm not sure if the 1 pill a day instead of 2 messed me up or was it stress too, because we also had to plan a wedding for my daughter in only 4 months due to her monther-in-law having cancer. Just letting you know my experience on 1 pill a day, so now I am back to 2 pills a day.
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Thanks for sharing your experience Suzie. It is so hard to know if the shedding is due to stress, or the reduction in your dose. Everyone's bodies react so differently, it is so frustrating to know what is going to happen! I had AU before the xeljanz, so maybe depending on what "type" of alopecia you had affects your experience as well. My derm is not very personable, and has his way or the highway approach, making it difficult to even voice my opinion on reducing the dose.
Please continue to update us on you progress, good-luck!
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You are so right Xeljanz girl....It seems like everything I try to eliminate stress from my life, something major happens and I am not the type of person to just let stuff roll off of me, no matter how hard I try....I wish I could! Just had something major happen to me Friday night and was sick to my stomach both Friday and Saturday because of someones actions, so probably another set-back coming my way!
I am seeing a new dermatologist cause the first one had her assistant come into the room and tell me that there is nothing else she could do for me....Really? Also, she never monitored my patches as far as size and quantity, etc. I had to keep telling her where all of them were and it's not like I had a ton of hair at the time! Good luck to you as well.
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I'd love to hear more about your weaning process! Please do keep us posted!
Fingers crossed that you will go into remission after this long on the drug! :) :) :)
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Hi Xeljanzgirl, my derm has also discussed reducing to one pill a day, but I am so scared to try it. I have been on this drug for three years now with full regrowth. Please keep us updated if you reduce to one. It would be so encouraging to hear a success story with reducing and maintaining hair.
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Permalink Reply by Susan McAdams on
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Hey Folks—
A couple updates related to some of what’s been written on the past month on this discussion page...
First, my wonderful doctor here in Los Angeles had her team of assistants take on Blue Shield of CA to make an appeal for coverage for Xeljanz. I got some cold, recorded message from Blue Shield the other day saying the request by Dr. Madkan for Xeljanz coverage has been denied. I’m supposed to get a letter that explains WHY. Can’t wait to read that piece of garbage. I’ll send it as a screenshot if it’s worth sharing. F***ers. I’m so tired of this shit. I know this is not the only medical condition that screws patients over with astronomical RX costs and insurance denials. But, I’m just over Pfizer’s political bullshit. No matter what your political affiliation is or whom you voted for, you should know that the CEO of Pfizer is in the GOP’s back pocket. They have no interest in serving human beings. It’s all about profit—and in this case, marketing Xeljanz to both RA and Alopecia patients is not a profit-win for Pfizer. So, they have zero motivation to push the FDA to approve it for us. Now, if this lovely tax bill passes in the US Senate, that means no more writing off my $36,000 medical expenses due to the Xeljanz cost. F***ers.
On a different note, I was getting highlights last week, and my hairdresser found one relapse spot—about the size of a quarter—on the back of my head, just below the crown. It clearly happened quickly because 3 weeks earlier, I was in for a haircut and she did not see anything. My hairdresser checks every square inch of my scalp every time I come in for an appointment. I had a small relapse like this in May 2016, and with Cortisone shots and reducing some major stress I was under, I got things in control and the patch grew back. I was under major stress again 2 months ago, selling my house and moving to a new one and helping my second daughter visit and research colleges. That 2-month mark is what I always look back on if I see any relapse. Oh, and I think I missed a few doses of the Xeljanz. I had a stomach bug for a few days and was throwing up after bedtime. I may have thrown up the Xeljanz! Anyway, I’m having the Cortisone shots again, my stress is back down to normal, and I’m not missing a single dose! For me, there is no option to try and wean down my dosages. I will most certainly relapse if I try it!
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I'm sorry to hear about your troubles
why do you think that marketing xeljanz to both RA and Alopecia patients would not be more profitable than simply marketing to RA patients? Maybe I'm taking a simple approach to thinking about this, but if I were selling a product I'd want to try to sell it to as many different demographics as possible.
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Salesforce is the major expense for a pharmaceutical company.
Setting up the sales rep team in usa would cost millions...
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