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Xeljanz Users...Let's Stay Connected Here in 2016!
Hi Friends--
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
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 Jcortez05 on
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I was on it for about a month u til I stopped a few weeks ago .. Hair was still growing very fast but other parts were falling out but had nothing to do with that I think it was anesthesia I received prior
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Permalink Reply by cmdd20 on
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Saw your posts about the anesthesia, I'm sorry that happened.
Did you notice that you were more responsive under the time release? And did you switch as a result of what was happening post anesthesia?
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I was only on the time release for about a month and a half or so .. Didn't my hair growth was pretty quick I didn't notice I change when I switched to the time release .. My dr just switched me over so I can take 1 pill instead of 2 . My hair is still growing even while off of it , but it also has only been 2 weeks off of it .
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I am starting my 7 month on xeljanz...I do both the pills and topical...I had some initial growth about 2 months in...but I have steadily lost most of that hair...now it seems nothing is happening...needless to say I am disappointed in the results so far...and so is my doctor...she was so disappointed in the results that she wanted me to stop taking the pills and only do topical...I convinced her to let me continue the pills...my insurance covers 100% of the costs and will for the next 2 years...I am willing to take the pills until my insurance stops covering...but I am getting a little anxious to see some results
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Hi, does anyone know a doctor in the Washington DC area that prescribes Xeljanz?
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Permalink Reply by Susan McAdams on
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Would you mind sharing what kind of alopecia you have, and how long you have had it before starting Xeljanz? That information is always helpful for everyone.
Next week (Sept. 20), I am flying back up to Stanford for my quarterly post-patient exam with Dr. Ko. The last time I was there, he told me that his researchers have been using the data from the scalp biopsies that all trial participants gave when we began the trial. He said those biopsy samples have been able to provide a tremendous amount of information about individuals' RNA and other genetic info. The goal is, to compare that info with our response to Xeljanz and ultimately be able to make predictions about who is likely to respond to the drug and who isn't. Over all the trials that have gone on around the country, as well as the many patients Dr. King and other doctors now have, they are finding that about 80% of alopecia patients respond well to Xeljanz (not counting those with androgenic alopecia--not effective for them). So, the big question is, why do some people respond to the drug successfully while others do not?
When I return to Stanford next week, I will ask Dr. Ko where his staff is at, now, with analyzing that biopsy info. The last time we discussed this was when I was there in late April 2016. Maybe he will have some new info to share.
--Susan
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Susan...I have AU...I have had AA since I was 9 (I am 43 now)...but it was only a spot here or there...it turned aggressive about 1.5 years and transitioned into AU...before I lost all my hair (around August 2015) six months prior I had a full head of hair with virtual no bald spots
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hi everyone
hope everybody get good results with xeljanz
i'm on my xeljanz around 6 months
the result not too bad it's fine, my scalp hair still growing but only i have my eyelashes and brows not yet!! and after i took a shower a lot of hairs in my comb!!
do you think guys that normal?
what you think??
maybe i have to up my dose 4 pills ?
my eyelashes and brows are annoyed me
thank you
and i wish all respond me as soon as
thanks all
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Hi Sultan--
Please read my response to the post above yours.
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Has anyone dyed their new hair? I have a crazy mix of blonde and brown and would like to just dye it all brown but I'm scared of damaging my new hair!!
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I have added highlights to my hair to fix the crazy color variations, and I have had no problems. Rememeber, alopecia has nothing to do with the hair shaft or weakening it. It deals with the amino acids at the base of the hair follicle. So, whatever you do to your hair should nave no impact on your alopecia. Of course, hair dyes do dry out the hair shaft, but that is for anyone. I suggest you stick with lowlights so there is minimal-to-zero bleach involved, and you'll be just fine.
Oh! I meant to share with you all, but while we're on topic here, I decided to add a little colorful fun to my hair. I totally love it! See photo attached: - Attachments:
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image.jpeg, 380 KB
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Permalink Reply by Jiggybear on
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Hello Everyone,
I had an appointment today and was put in an oral steroid for the first time. I mentioned Xeljanz and all the success people have shared here while taking it. My doctor has been following it in the literature and would love to try me on it. He said he can foresee us trying down the road but his fear is that insurance won't cover it because Alopecia is cosmetic.
Has anyone had to fight with insurance and won? And does anybody know what the price is if insurance won't cover it?
If my questions are a repeat of someone else I apologize. Thank you in advance. Barb
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