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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 dr. who on
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" Even though ADML started the thread talking about his trial on Xeljanz, in general he doesn't try to control what other people talk about. " well said xeljanz miracle, and that's exactly the reason in my opinion why that thread has become one of the most valuable discussions in this forum
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i am not celiac, however, after eliminating gluten from my diet 15 months ago, my hair stopped falling out after 13 years. as soon as i started xeljanz my hair growth accelerated. diet definitely has a lot to do with auto immune disorders, including alopecia. doctors more than likely will not agree or confirm that it could possibly work. start with a food allergy test and stick to it. be patient, it will take a bit longer that 3 months, i noticed major changes within 6-7 months. it works.
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Great. My dauther took Jakavi for 6 month and she had a complete regrown of the hair. The problem is that Jakavi is absolutely to expensive and now she will switch to Xeljanz. In the meantime she is going to eliminate gluten and she is going to take Omega 3 pills in big quantity. We will see what will happen. I'll let you know.
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Permalink Reply by Susan McAdams on
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Hi Folks--
I appreciate people sharing thoughts on diet and such, but I would really like to keep this discussion forum focused on those who have tried or are currently taking Xeljanz. The reason being, I would really like to gather data on the successes and/or failures that people on this med may be experiencing. I am interested in these topic in particular:
1. If you have taken Xeljanz and have either reduced or stopped the medication, how long did it take before you saw shedding?
2. If you are one of the above, what was your alopecia history (AU? AA? How long? Was there ever a remission in your past?)?
3. (Very Important): If you reduced/ceased your Xeljanz dosage, started to see shedding, but then went BACK on your old dosage ASAP, did it halt the shedding, or did shedding continue? How bad was the relapse?
4. Are you experiencing any negative side effects while on Xeljanz?
These questions, above, are the focus of this discussion forum. Doctors do not have the necessary data to make decisions about dosages and if or when to cut back on dosage and how gradually. It is VERY important that people come forward with their stories related to the above questions. If you wish to discuss issues like diet or how to get the drug in other countries (illegally), please create your own discussion page for that.
Thanks,
Susan
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Thank you Susan, those are the issues I also think we have to focus on as our experiences with xeljanz are somewhat uncharted territory. We can all learn from each other's successes as well as setbacks from changes in dosage. SO important to determine long term maintenance.
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Hi, thank you for starting this group! I´m following your discussion for some weeks with great interest. I´m from Germany, so my English isn´t so good, sorry! My daughter is 17 and has Alopcia since January 2015. She lost eyebrowes, lashes, bodyhair and has only10 percent of her skalp hair at the moment. We tried Cortisonlotion, DCP, Acupuncture without any results. So we decided to go to my rheumatologist next week and ask if he will describe her a rheuma drug. I myself have RA since 17 years and took these drugs for a long time without any sideeffects. I worked by this rheumatologist for many years and saw a lot of people taking these drugs also young people as my daugther and I think, when it is under control, we would try it. Xeljanz would be an option for us, if we can get it. My question is: Has anybody of you experiences with MTX, Sulfasalazin or Cyclosporine? Xeljanz can be described for RA in Germany now but it is very expensive. Thank you!
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Sulfasalazin is like Mesalazina, the only difference Mesalazina work only in colon...i tried Mesalazina and i'm using(only 12 days now) for a little medical colitis(fortunatly just now all good) and in these 12 days i have had a lot of hairs come out ...i tought it could be cause my meditation ( i make meditation 30 minutes every day) but i made meditation from 4 motns and use mesalazine only from 12 days and the most hairs are cmoing now in these days ...so, of course i can be in wrong, to me is mesalazine that helped me to have more hairs...sulfasalazin work in all body not only in intestin so i think its work can be a lot of stronger than mesalazine against alopecia areata ...my idea, speak whit doctor and make a try...also i read side effect of sulasalazin are no very important and the cost is no high ...if you want stay in touch this is my link where i put all my progress:http://www.alopeciaworld.com/forum/topics/i-begin-the-xelijanz-cure... luck!
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Christel i meet it ...appears it helps
http://dermatologytimes.modernmedicine.com/dermatology-times/news/m...
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I would recommend trying diet modifications but this trial sounds so specific I don't want to insult anyone in this trial. Sharon Blount, suffering alopecia totalis since 1997
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Permalink Reply by TammyLHoller on
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Hello Susan, I was thinking about using Xeljanz and I was wondering if you had any suggestions on how to go about getting it. Did you go through your personal doctor or do I need to find a alopecia specialist? I have lost all of my hair and it has been almost three years and I have tried everything and nothing has worked.
Thank you!!
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Hi Susan. Just heard some sad news from a friend, and one of the first people on this forum to get most of her hair back on Zeljanz . Hopefully she will post here soon. I am starting to be very concerned about the number of people experiencing relapses while taking Zeljanz. It seems that once a relapse starts, nothing is able to stop it, which is absolutely devastating. We definitely need to find out why this is happening and if there is a way to halt it. Do you have any thoughts?
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Hi Starshine--
I'm so sorry to hear this news about your friend. I hope she does share her story here, because any info--good or bad--is important for all of us to know about. For example, did she stop the drug altogether, or was she just tapering off gradually when shedding began? Once she noticed new hair loss, did she go back to her original dosage or did she stop the drug? This is a crucial detail that we all need to learn. Especially since some of us are looking ahead to possible reduce our previous dosages. I do not plan to even think about doing so until I have FULL regrowth on my entire body. Or, if I am forced to should side effects occur. I think some people have either ceased or cut back on their Xeljanz dosages way too early. However, that may not be a choice for some due to financial burdens or health concerns. This is exactly the topic we are all trying to learn about--that includes my doctors at Stanford. Any info you can provide, or if your friend can share her story, will be invaluable to all of us here.
--Susan
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