Alopecia World
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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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Karaholly, you should look at the other forums on this site.....there are many people who have filed for the "hardship" program. I, personally haven't had to since I, too, have RA and am taking Xeljanz for both RA and AA. My AA started to fill in on it's own and I'm not sure how much of a role the Xeljanx played in my success of all of my hair coming back...
.I'll explain. When I was a teenager 30+ years ago, I lost a lot of my hair around the nape of my neck. My mother took me to our family doctor and he had no clue as to what it was. It took months, but it eventually grew back on it's own with no medication, shots, or anything. After the birth of my 2nd child when I was 26 I developed RA. Throughout the years the pain and swelling became so bad that I was put on biologics: first was Enbrel, then Humira and finally Orencia. I had success with each of these, but eventually they just stopped working. About 3-4 years ago my hair started shedding and I developed large bald spots. My hairdresser told me about Alopecia Areata and that was my "aha" moment. This is what I must have developed as a teenager. I saw a dermatologist this time and she started me on steroid injections. Some of these helped and I saw hair growth, but some of the spots it didn't work on. I then asked my rheumatologist about Xeljanz. He prescribed it to me and I've been on it since November. I am happy to report all of my patches have filled in and no more have developed. It has also helped my RA tremendously. After some of the hair was filling in I made an appointment with an expert hair designer in hair loss. Her staff was awesome and they gave me hair extensions that would not damage my hair. After 6 months of those, I have moved on to Dream Catchers...I am hoping that by next year I will NOT have any fake hair....just my own. I hope this helps you.
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Permalink Reply by Susan McAdams on
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Hi Folks--
Sorry I have been out of the loop here. A very busy year! However, want to provide an update and answer a few questions some have posed here.
I am still taking the same dosage of Xeljanz at 5mg twice a day. I didn't bother switching to the once-a-day extended release tablet since everything is working well. No reason to mess with that. Since that small relapse I had in late May of 2016, I have been very diligent about taking my medication and not skipping dosages. And, doing my best to manage stress through a very busy, intense year (finishing an interior design certificate at UCLA, selling my house, dealing with an ailing parent...). Thankfully, I have had no signs of any new relapse, and no negative side effects on the drug. This February 2018 will be 3 years since I began the trial at Stanford that got me on the drug and grew back my hair in 10 months. I am very grateful Xeljanz worked for me.
I had been making trips back to Stanford 3 or 4 times a year to talk with my doctor and refill my prescription with him. Last month, I decided to take a break from my travels from Los Angeles up to Palo Alto in order to save the cost of airfare, car rental and medical costs (since Stanford Dermatology doesn't take Blue Shield of CA insurance anymore). Plus, I wasn't getting any new insights into what new meds might be coming down the pipeline. I have been told that other pharmaceutical companies are working to develop their own JAK inhibitors like Xeljanz, which would increase competition and hopefully produce a drug that will be FDA approved for AA and AU. Haven't heard of anything new yet, so I keep up with the Xeljanz.
While on the drug, I have alternated my prescription refills between CVS Specialty Pharmacy and Costco. The reason I used CVS is because they were the only pharmacy I have found that accepts Pfizer's $12,000 per year co-pay deal. However, once that runs out (after 3 1/2 months, now), the out-of-pocket cost per month with CVS has climbed to over $3,900! That's almost $800 more than last year!
The other day, I returned to Costco to refill my prescription, and their out-of-pocket cost is less than $2,200. Insane! Their prices dropped by $800 since last year. PLUS, when they filled it, they said Costco has a voucher which reduced my monthly supply down to $945! I asked how long this voucher will be available, but they didn't have an answer. I was certainly grateful to get a break this month by paying under $1,000 for the drug.
If anyone knows a pharmacy that is giving great rates for the drug off-label (as we must get it), please share. Currently, that's the best price I have found. However, Costco doesn't take the Pfizer co-pay, so when you use that each calendar year, fill it through CVS Specialty (or, please share if another pharmacy takes the co-pay). When the co-pay runs out, try Costco.
In Los Angeles, I am now seeing Dr. Wendy Madkan, she has offices in Santa Monica and Beverly Hills. She took over Dr. Richard Strick's practice when he retired, and she is terrific. She keeps up on the research, and her office staff has been working diligently with alopecia patients' insurance companies to try and get Xeljanz covered through appeal. She is currently trying to get my Blue Shield of CA to cover it. I don't know if they will, but I appreciate the efforts she and her staff are making on my behalf.
If anyone has Xelajnz covered through their insurance (not on the Hardship Program), please share. Open enrollment is going on, and I'm always shopping around to see if a new insurance company might be worth the switch. California is tricky because there is not a lot offered a far as insurance goes. That's why I have stuck with Blue Shield.
Also, some people here have asked whether I have RA or not. I do not. So, it would be difficult to try and get a false diagnosis in order to get Xeljanz covered. It's not something a dermatologist can diagnose, and I don't feel comfortable about asking a medical professional to fake a diagnosis on my behalf. I wish it were easier.
Anyway, I have been maintaining the status quo while waiting and hoping some new drug will be on the horizon soon. I don't predict Pfizer will approve Xeljanz for alopecia. They have made no effort to do so--even after the major success from the Xeljanz trials for alopecia. Of course, it's about marketing and profit on their end.
Curious to hear if anyone has success stories to share. I should probably start a new discussion group, as the title for this one is outdated.
Best,
Susan
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Permalink Reply by Kristin on
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I've been on Xeljanz for about a year now and my insurance covers it completely. Part of me is worried that this is some clerical error, of course. I use Blue Cross Blue Shield of Illinois through my work. My doctor and I agreed to keep me on 5mg twice a day and not switch to the time-release in cases it is a clerical error and insurance catches it. Kind of nerve-wracking, but we don't want to risk it!
My dermatologist at OHSU (in Portland) prescribed it to me in November 2016 just to see what would happen, and it worked. I get labs every 3 months, which are about $500 out of pocket. My only side effect is higher cholesterol.
The only thing is that I'm 33 and would like to have children. I'm going to have to stop taking Xeljanz before I get pregnant. I wonder if anyone else out there is a woman of a childbearing age and taking Xeljanz?
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I guess the whole insurance thing depends on what state you are from. People in California are having much harder time getting Xeljanz covered, even after multiple appeals by their doctors. I will see if anything comes through with Dr. Madkan's attempts, but not holding my breath. But, that's good news for you, Kristin.
I guess if you choose to get pregnant, you will have to go off the medication. But, at least you know Xeljanz worked for you the first time around, so there's an excellent chance it would work again. It's a tough dilemma--but I understand.
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Susan, so glad to hear from you! It would be great to see hair growth pictures if you can.
I, too, have had good luck with the Xeljanz (10 months), and was AA with several patches and lots of shedding. My only concern with the Xeljanz is I'm constantly tired. It literally drives me crazy. I posted pics a while back. I also have RA and do know that with RA you get tired, but when I was on Enbrel, Humira and Orencia I was NEVER this tired. Xeljanz is helping with both the RA and AA. I asked my Rheumatologist if I could start taking 1 pill a day to see if that helps with the tiredness and he told me to try it. If I see any sign of my hair falling out again, I'll continue with the 2 pills. Thanks again for the update.
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I'm sorry to hear that it's making you more tired! I personally haven't noticed that side effect of Xeljanz. I wonder if anyone else experiences that or if it's related to Xeljanz in combo with RA.
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Hi Suzie--
I don't know about others feeling tired from Xeljanz. It hasn't had that effect on me. Perhaps it just depends on the individual's response to the drug. And, keep us posted if you see any hair loss on 1 pill per day. As I shared back in the summer of 2016, just skipping that second pill on occasion did enough to prompt a relapse. But who knows how your body will respond?
--Susan
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Permalink Reply by Hopemom on
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I learned that concert pharmaceutical is developing a new JAK INHIBITOR called CTP-543. Hope that it has a better safety profile and gets approved by FDA eventually. I also learned some better topical JAk is on the way.
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FYI...
I just started a new discussion group, as this one has gone on for a very long time. We are in a different place now, with many alopecians on Xeljanz and our shared experiences. Discussions are moving in the direction of how to get covered by insurance and new JAK Inhibitors on the horizon.
Look for my new discussion page that will focus in that direction. It is currently waiting for approval from the Alopecia World powers that be. It should be up in a day or so. My new Discussion page is titled: "Xeljanz and Looking Ahead to the Future."
SEE YOU THERE!
--Susan
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Thank you for sharing your beautiful picture! We are all so happy for you and will look forward to your new discussion page. As for the being tired all of the time, it might be related to RA users because when I googled it, it seems that many RA patients taking Xeljanz have this happen to them.
Suzie
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Thank you, Suzie--
My new Discussion Page is up and running. I think a good start there is to address surfacing minor, yet annoying side effects possibly related to Xeljanz. I did a lot of reading up on that yesterday. Rapid weight gain is a major complaint so much so that Dr. King has acknowledged in a recent interview that it can be a side effect of Xeljanz. And others complained of exhaustion, but not with as much frequency--and in those cases, were mostly RA patients as well. When I started the trial at Stanford and for a good 18 months after, I continuously asked Dr. Ko at Stanford if weight gain is a possible side effect of Xeljanz. Every time, he said "No, the data doesn't support it." But opinion seems to have shifted. I, myself, gained 10 pounds rapidly in 2017. I thought it was due to all the stress of my busy life this year. But, since June, I have been busting my ass to get the weight off, and it's a nightmare. Can't seem to lose it!
Anyway, I will pose this question on my new Discussion Page, along with the topic of exhaustion.
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