Alopecia World
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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 Starshine on
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Thanks Susan, having a relapse is my biggest fear. I am so glad to hear your patch is re-growing. Did you get the cream from the pharmacy in a Philadelphia?
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Permalink Reply by Susan McAdams on
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I got the cream from the compounding pharmacy in Philadelphia where everyone else is getting it. Dr. Ko was not confident it would do anything, as others using the cream from there were not seeing results. However, I had an appointment with my dermatologist here in LA today, and she not only noticed dark terminal hairs growing in that relapse patch in front, but she saw new hair (still white) growing in a spot I have in the back at my lower hairline that had never budged, even after all the regrowth over the past year. So maybe it is due to the cream. Dunno. But I'll take it!
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Permalink Reply by sadele on
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Hi Susan,
Thank you so much for taking the time to write everyone.
I wanted to add that I have had some re-growth and almost a full head of hair. I have hair on my legs, arms, rest of my body and like 4 eyelashes. Still no brows. Unfortunately over the past couple weeks I've noticed a lot of shedding. Primarily on the top crown of my head. It's now to the point that you can "see through" the hair and my scalp is very visible. I did have more eyelashes but those fell out and now I'm left with the 4 that seem to be hanging on. Every time I run my fingers through my hair, there are hairs on my hands and in between my fingers.... This has knocked me down a few steps emotionally. The thinness on top is very apparent and I can't cover it with the hair I do have. I'm curious if anyone has tried Spironolactone in conjunction with Xeljanz. I know the medication is an anti-androgen and an over production of androgens in women can lead to a rise in DHT which in turn can lead to hair loss/thinning. I was AU for about 6 months before I started Xeljanz, so I'm not even confident my current situation has anything to do with hormones. I've also been using Latisse, but obviously it isn't working like I would like it to. Just wanted to do a little update myself. - Attachments:
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Permalink Reply by Jcortez05 on
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I have the same exact thinning sadele in the front and moving towards the back .. I think I'm going to get off of xeljanz let the loss occur then restart .. I was going through a very stressful time 2 months ago and also had anesthesia 3 months ago not sure if one or both of those caused this ..
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Seeing the hair shed is tough to see everyday... Have you considered going on Spironolactone? I go see Dr. King on September 26th for another follow up. I'm just really praying this is a cycle and nothing more.
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It has been 2 years since Dr. King broke the news about xeljanz.Why are we not hearing more news about the trials?Whos responding who's not are people going into remission and able to successfully cut back how many are losing their hair while still on the drugs.So many unanswered questions there hasn't been any news in months will this drug ever get approval for Alopecia?If it wasn't for this site we would know nothing.Im sure there are many people out there who are suffering with Alopecia who don't even know about xeljanz.Jcortez05 if I were you I wouldn't stop taking xeljanz you had such good results maybe your system just needs a few months to calm down.It seems like all the excitement over these new drugs have quieted down.
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Football fan it seems you are not doing much research about JAKs. There are numerous new reports about JAK inhibitors for alipecia. I think it was this month two successful reports have been published online. You can find many others.
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Could you possibly share what your doctor's take is on your relapse? Is stress pointed to as the main culprit? Do you have any other medical condition? And how long have you been on Xeljanz, and what percent of regrowth did you get to before you saw this thinning/shedding?
Any info here will be a big help to all.
--Susan
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Hi sadele--
Since reading your post here, I did a little reading on Raynaud's since I was not familiar with it or its symptoms. Who is your doctor who oversees your Xeljanz RX? I also read back on some of your older posts, and you were saying your doctor had bumped you up to 20mg (twice the Xeljanz dosage)at some point. Was that AFTER you saw shedding, or was it early on to kickstart the regrowth?
Most important, it would be extremely helpful to all of us on Xeljanz (or those considering starting it) to learn what your doctor is saying about your relapse and excessive shedding. This is what we all are trying to figure out--Does having another autoimmune disease or other health condition increase the chances of shedding relapse while still on Xeljanz? How many of us had relapse possibly just because of stress (see post below)? Or, is it just a crapshoot with each individual and how they respond to the drug?
Any elaborating on your story--especially the doctor's take on all this--would be invaluable info.
Thanks!
Susan
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Hi, I take Spironolactone 100mg 2x/day with Xeljanz 5mg 2x/day
I had great results! Dr King was very happy to see the improvement after we added Spironolactone. Sadele, if you want message me and I'll send you my phone to explain more about it. I had to start on a low dose and increase little by little and doing several blood work. So far all is well and no side effects.
I started Xeljanz around February 2015. Then I stopped for a few months while dealing with insurance issues, but I didn't lose any hair that had grown on Xeljanz.
I'm on my 13th bottle of Xeljanz now. Always on 5mg 2x/day
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