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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Jiggybear, I found this from this site on another discussion board.
To qualify for Hardship Program you need to submit proof (a letter) that your insurance REJECTED payment. Then, if you qualify, Xelsource will send you a letter letting you know you were accepted into the Hardship Program and you need to schedule a delivery date for your Xeljanz. You have to schedule a delivery date each month. When you call they ask you if you want to listen to side effects info (they mail a copy every month with the medicine so I always say no.) They also ask you if there have been any changes since the previous month. That's it. I just qualified for my second year of Xeljanz. I have complete regrowth, except under my arms and that's fine with me lol!
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Permalink Reply by Jiggybear on
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Thank you, I'll have to talk this over with my doctor. I appreciate your help.
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Permalink Reply by texas2016 on
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So I am starting my 8 month...and nothing to show for it so far...most of the hair I did gain has fall out and now most of the new signs of growth have stopped and begun to recess...not really sure what to do now for treatment...I felt like Xeljanz was my last best hope...now I am beginning to lose any of the slightest of hope that Xeljanz will help me...
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Have you given any thought to asking your doc about the extended release pills?
I'm coming up on 12 months on Xeljanz. I saw things only worsen through the first 3 months, at which point my doctor upped dosage to 15 mg / day - then started seeing some results finally. Wouldn't quite say that I'm at full regrowth but in a much better situation than I was when I started (would probably get off X at this point if I didn't feel like it was going to regress once I stopped the medication).
Not clear to me if the success I've had at 15 mg is because the higher dosage or just because I have the medication in my system for more of the day (one in each morning, afternoon, and evening). I think there's a good chance it's the latter and if that's the case, the lower dosage 11 mg extended release may be as effective or more effective than the 3 pills per day I'm on currently.
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I have been on 2-3x per day and upped to 4x per day last month...additionally I am using the topical Xeljanz...however my response to the drug has gotten worse over time...initially I responded very well on 2-3x...growing hair within 2 months...about 4-5 months in I started to lose the hair i gained...and now 8 months in I am pratically totally bald...
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You are unfortunately maybe a non responder.
Majority of people are good responders.
I took xeljanz for 7 months and i stopped it. I had very good improvements for my nails. More body hair, a little bit more facial hair but not that much on my scalp.
Alopecia universalis is tough... very tough. But knowing also that we are non responders to xeljanz is sad.
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What is odd to me is that I was responding (I think pretty well) for the first 5 months or so...then all of sudden I stopped responding and started to lose the hair that grew back...there has been nothing that changed in my life, from a stress level, etc,...I thought maybe I should up the dose and started taking 4x a day...but still no change...
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Permalink Reply by Susan McAdams on
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Try not to despair, Texas. Two weeks ago, I went back up to my Stanford doctor for my quarterly checkup. As always, I ask Dr. Ko what is new with the research and whether or not FDA approval is on the horizon. He said that Pfizer is not making any efforts to push FDA approval for Xeljanz for alopecians. I think the company wants to keep the drug marketed solely for RA patients. Strictly an economic move. HOWEVER, Dr. Ko said at least three other pharmaceutical companies are working to develop their own JAK's specifically for alopecia. They are trying to streamline the pathways upon which the drugs travel--honing it down to specifically target alopecia.
What does this all mean? First, it's a good sign that other companies are getting on board and using the research from the Xeljanz trials to get their own drugs out there. That may mean in the near future that there will be other drugs to try for non-responders to Xeljanz. Dr. Ko said new trials are on the horizon for what is being developed. That may give you a chance to try something else which may work. I asked him to please inform me about any new trials that are slated to begin this year. If you want to contact me via private message, I will give you contact info so that you may put your name in as a potential trial patient. Maybe one of these new drugs will do the trick.
Good luck!
Susan
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Permalink Reply by Rascalx2 on
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Hi all, First time posting. Im AU, Been on xeljanz for 3 months, 11 mg, 1x a day, its time release. I have nothing yet. Changing to 5 mg 2x a day today. I do have a cough and can become "wheezy". Never had allergies. Have a cold too right now. Want to stay on xeljanz to see if any growth happens. Did blood work 2 days ago all is normal. For those who have had growth w xeljanz, is it gradual? Or is it fuzz overnight? I know it starts to show at 3 1/2 month mark. Lost all hair in 8 days after discovering dime sized bald spot in back of head last new years. Anybody have input?
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Everyone seems to respond differently patience is important also why are you switching from the 11 mg pills. I personally had more luck switching the opposite way 5 mgs twice to 11mgs once good luck
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