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 Courtney on
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That's about the time frame I began seeing a little fuzz!!! So exciting! Stick with it, my hair is still fine but I'll take it!!
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Permalink Reply by Jcortez05 on
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I get my meds through Walmart specialty .. Dr sent the script they call you and you give them the copay card info you get meds in 2 days
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Permalink Reply by vjensen14 on
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i just wanna put this out there for everyone on the xeljanz that is having regrowth. I got very confident after being on xeljanz for 7 months with total regrowth that my hair wasn't gonna fall out if i missed a dose every now and then. Now my hair is coming out very rapidly and i am so mad at myself for thinking that way. if its working then continue what you are doing and don't mess up your progress like i did!!
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Have you tried upping the dosage? Or mybe try something along side it just to stabilise and give it a boost might be worth trying.
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Permalink Reply by 3ebdie on
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Don't be mad about yourself. As far as I know you were still on 3 pills a day beginning of December right? Unless you completely missed out on your medication for weeks I cant see you did anything wrong?
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Please check your Vitamin D levels!
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Years ago (1980s) a popular topical application was Lidex gel please check with your dermatologist to see if this is still appropriate.
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I have mine were at 11 very low I am currently taking 1 50,000 dose of vitamin D weekly
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This is my 1st "participation" in one of "Alopecia Worlds" discussions. I am 75 and am in excellent health other than hypothyroid condition (1994)....5 yrs. ago...lost all hair (over the course of regrowth and losing all again)...although eyelashes and eyebrows returned. My question regarding Xeljanz: As I understand it Xeljanz is an immune inhibitor which while using, canl open your system up for all kinds of other disease attacks such as cancer. (?) Is this correct.
Thank you,
Barbara Sjolund
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Permalink Reply by Susan McAdams on
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Can JAK inhibitors decrease the effectiveness of one's immune system? Obviously, that is a possibility. That is what an "immune suppressant" can do--that is why it is named as such. Should someone with a compromised immune system or family history of serious diseases be on these types of meds? Most doctors would advise against it. Understandably so. Would I take the drug if I were at risk? No.
Those of us on Xeljanz know that risk. It is the first thing we read on the label. It is the first conversation we had with our doctors. With that said, how many of us on the drug have had significant increases in illnesses? I have not. To be completely honest, I feel as if the drug calmed down my over-active immune system to more normal levels. But of course, I will continue to be closely monitored by my doctors.
Has anyone on the drug had any unexpected illnesses develop? If so, please share. That is a major reason why I opened this discussion loop.
--Susan
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Thank you, Susan, for your reply. It's an interesting and important discussion.
Barbara Sjolund
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