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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 Jalex4109 on
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was really interested in knowing wen did you see first results on xeljanz
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Permalink Reply by Fenster on
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Hi Susan, and everyone.
First a little backstory. My name is Bill and my son Billy is 14 and has been AU for just about 3 years. It started out for him with a patchy eyebrow that we tried to fix with shots and then within a few months he had suffered total loss. The full loss of his hair came quick. Sadly he has wore his knit cap 24 hours a day and has struggled with his self esteem and doesn't like to go outside much. He's a bit better now, personality wise, but nothing like he used to be. Looking back it seems just more than a coincidence that a horrific stressful event was impacting our family during the time he lost all of his hair.
Fast forward to today. We are patients of Dr King and our medication comes tomorrow and we're anxious, excited, nervous. Feelings that many here know all so well. Recently he has a very small patch of hair come back and it seems a eyelash is also coming in. We only knew this because Dr. King makes him take off his cap. I try to guard myself from thinking this very minor regrowth is a good sign but I know in my heart it's just a random function of the disease.
Thank you Susan for your updates and God Bless everyone here. Please feel free to reach out to me privately or through this forum. We sat down and talked to our son about being guarded while starting this medication. We don't want to give him false hope.
Dr King is away until September 1st. I want to know how many here also take Vitamin D?
Thanks for everything.
Bill
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Permalink Reply by Susan McAdams on
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Hi Bill--
I wish Billy a speedy regrowth. We have seen on this site and through the research that males tend to get faster results. I cannot wait to read your updates soon!
I have been taking a Vitamin D supplement since discovering that relapse patch back in late May. I had blood work done a couple years ago that showed I was a little deficient in Vitamin D. Most people are--especially since we use sunscreen more regularly. I had read some posts here about folks with Vitamin D deficiencies, so I figured I may as well just add it to my daily regimen again. Nothing radical. I really have no idea if it plays a major role or not.
Good luck!
--Susan
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It's really great to hear something positive after having AU for 34 years. I am just starting my 3rd month of Xeljanz XR. I've had absolutely no side effects so far and beginning to show regrowth on my head. White fuzz for now but some pigmentation is beginning too. I am also using Bimatoprost on my eyelashes and eyebrows. I've had success with that in the past on my eyebrows & lashes but didn't keep up with it due to the cost of Latisse. I've also gotten steroid injections in my eyebrows and eyelashes over past 20 or so years but the hair always fell out again as soon as I stopped them. So Latisse/Bimatoprost on the eyebrow & lashes for 2 months with 1 set of injections this past month. So significant growth there. I just have to fill them in with a touch of eyeshadow. That's a relief to not have eyebrow pencil sliding off my face by noon with 95* temps & 100% humidity. I have hope finally in the Xeljanz working for us too!
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Permalink Reply by Xeljanzmiracle on
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Congratulations! The white fuzz is how the regrowth begins. Wishing you much success.
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Once you are getting terminal hair growth, you may want to put the Latisse away. It is very expensive for what it does--simply extends the eyelash growth cycle. Plus, Xeljanz is pricey enough as it is!
In any case, I used Latisse when I was still losing my hair back in 2013, but stopped when I lost it all. Latisse will not help for AU. And once I was on Xeljanz and started to see eyelashes growing back in, I just let them be. I never went back to Latisse again. The Xeljanz alone grew them back fully.
--Susan
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I've been getting the generic bimatoprost mail order from outside of the USA. It's 6ml (2-3ml bottles) for $37 plus $9.95 shipping per order. I used it off and on for a few years on my eyelashes and eyebrows. It works well for that. My eyebrows fell out 34 years ago but I get regrowth everytime with steroid injections or when I've used Latisse (bimatoprost) on them. Paying over $ 120 or so, per script, as Latisse (3ml bottle) is why I'd quit using it in the past.
This time I started the bimatoprost about 5 weeks before getting a boost with the kenelog injections in my eyebrows. I had regrowth from just the bimatoprost by itself.
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Hey All--
I am posting a photo, below, of my regrowth to date in that relapse patch I discovered over Memorial Day weekend. Some people have been asking about my progress, and a few have been worrying about relapse. Maybe this will bring some peace of mind to some.
So, here at 2 1/2 months after discovering that relapse patch, you can see terminal regrowth in the center of the patch. There are also light hairs coming in throughout the rest of the patch, but hard to pick up in a photo. There is a little indentation that looks a bit red in this photo. My derm in LA said that is from the Cortizone shots that I have had 3 times (4 weeks apart) since I found the patch. That is a normal result of Cortizone injections, and the dimpling eventually goes away.
I have not seen any new patches or shedding. And the patch you see in the photo is the same size in diameter as when I discovered it.
I don't know what combination, if any, of the steps I took after discovering the relapse contributed to regrowth. Cortizone was never a big help for me in the past (but I did it this time, anyway). The cream may have helped--I am seeing some light hairs in the back in a spot that never came back. But, those hairs still remain light. My oral dosage of Xeljanz remains the same (5mg twice daily). I have been taking one dose daily of Biotin, Vitamin D and Vitamin B12--nothing radical there--I have taken those supplements off and on over the years, but am doing so consistently at this time. Maybe the mindful reduction of stress helped. If I had to bank on one factor, I would go with the stress reduction.
Anyway, here is a photo that will hopefully bring some worry (and stress) down for others... - Attachments:
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image.jpeg, 1.1 MB
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So happy your getting regrowth ! That has certainly answered some questioned and clearly stress is certainly related to hair loss.
Kind regards
Singh
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Question to all on Xeljanz...I am AU and have been for about 1 year...before that I had AA since I was 9..I have been on Xeljanz for 5.5 months...I saw results about two months in...first it was white hairs and then terminal hairs on the sides of my head/temple area...and some facial hairs as well...but since that initial response I had plateaued...and even lost some of the hairs that grew in...now it seems like the progress has regressed...I take two pills every day and have since I started...I am also using the cream as well...I am fortunate enough that my insurance is paying 100% of the cost...but has anyone else experienced similar results?
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