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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 strawberry on
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Sorry to hear that it started falling out again. May I ask whether you were on Xeljanz when you went under anesthesia? Perhaps it's a temporary thing once the anesthesia is completely out of your system. I ran a little search on this http://www.hystersisters.com/vb2/showthread.php?t=265774 and apparently it can stay around 6 months? Seemed like other people experienced some hair loss after anesthesia as well, so it might be normal.
How about you doing now - are you still shedding?
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Permalink Reply by SeattleGirl on
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Hi Susan, I am brand new to this website, having only just stumbled upon it a few days ago! I've spent many hours reading the discussions on alopecia and Xeljans that you seem to be spearheading. I'm 56, and I've been AA off and on for 10 years, and AU for about 6 months last year (then remission for 6 months), and now AU for about 4 months now. I've been to two so called alopecia specialists in Seattle over the past year, and neither have mentioned anything about Xeljans or the trials that have been in process! They just suggest Rogaine and reducing stress. So glad I found this website! I have a few questions for you, if you don't mind, that I couldn't find answers to in the discussion pages. I just sent you a friend request on here so hopefully you will see that. I'm mainly curious right now if you've heard any update on when Xeljans might become approved for alopecia. Last year you mentioned several time in the posts that the doctors were hoping it might happen in 2016, but I haven't seen any further mention. I would love to try Xeljans, but at $3500/month it's really not a long term option :( Thanks for any update you might have on this! Judy in Seattle
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This is not the only drug out there with a scary warning.Almost every single drug out there has a list of possible side effects a mile long.Why do people take prescription drugs to improve their quality of life.It is a personal choice.
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Permalink Reply by Susan McAdams on
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Agreed. I don't know who "Zimrie" is or what his/her agenda is, but to post a short, unbalanced article that does not discuss any of the health results to date from those in the Stanford, Yale and Columbia trials, as well as hundreds of other patients now on Xeljanz with no negative side effects, is just plain baffling. The article says practically nothing. It just mentions possible deadly side effects. Have we seen that on the research? Have those of us on the drug not read the potential warnings nor discussed them in detail with our doctors?
My response to Zimrie's "post" which only contains that link yet no discussion of the research is: WTF? Why are you throwing scare tactics at us when we are all fully aware of the drug warnings, just as we are with any medication we take for other ailments?
I also want to add, in case any of you are wondering, that I am in no way affiliated with the Pfizer company, nor am I profiting in any way from writing about my experience on Xeljanz. I had AA that progressed into AU. I wanted to reclaim the life I had before this disease devastated me personally. I made a conscious, well-informed choice to go on Xeljanz, and for the past 18 months, I have had clear blood work, a normal mammogram result, and my hair has grown back. As long as I remain healthy, I will take this drug. When other options become available, I will explore those as well. But for now, Xeljanz is the only option, and it is working for me.
--Susan
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I totally agree Susan we sure do not need negative comments and articles we are all totally aware of the possible side effects which seem to be very rare.also the fact that are blood work is being monitored with no issues is positive. So any negative people out there keep in mind we are makeing a choice nobody is forcing is to take Xelljanz
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I couldn't agree more. It's been some time since I posted partly because of the amazing success our family has had with Xeljanz. We met with Dr. King June 2015 and started on Xeljanx July of 2016. Once year later my daughter has full grown hair, eye brows that need to be waxed (go figure) and beautiful eye lashes. Her self confidence is back and she no longer has to wear a hair piece. For a teenage girl...I would say she is a living miracle of what this drug can achieve. She has blood test to monitor (all has been normal) and she is back to her old self. So any negative news to me is just ignorance. Our goal now is to have insurance recognize how powerful this medication can be for treating Alopecia..and get this approved so everyone else can decide if it's the right course for them.
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Wonderful news about you're Daughter another great outcome from Xelljanz God bless and thanks for posting such positive info ( did you mean July of 2015 was when she started Xelljanz ?
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Thanks...yes sorry for that. She officially started Xeljanz July 2015 and had full regrowth. Absolutely stunning results...now the real fight is with the insurance company to start coverage.
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Permalink Reply by 3ebdie on
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Any new inspirational photos from your daughters hair growth? I am so happy for your family
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Permalink Reply by Zimrie on
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I did not deserve the abuse I took from Susan McAdams and the other people here on this thread.
I was waiting to see how many IGNORANT and self-serving personal attacks I would get before they got back to talking about treatments again.
What’s on my so-called “agenda” is my concern about what can happen to people trying to cure their illness.
I’m not “throwing scare tactics” at anyone and I dare you to get in my face with your violent temper. At no time did I insinuate that you worked for Pfizer Company, or trying to profit, nor did I ever even think it.
People here are insinuating that I don’t care about anyone’s recovery and that am just trying to threaten them. Well, I just don’t want to see anything happen and no one has a right to claim otherwise.
This is not the first time that I’ve seen people try to humiliate posters on here who never meant them any harm. I find it disturbing that they would bring their bullying tactics onto a site that is supposed to support people who are ill.
“I don’t know who “Zimrie is” really tops it all off!! You leave me alone and don’t you EVER try to make a spectacle out of me on public media. In case you couldn’t figure it out, I have had alopecia for years, I’m terrified of going on these meds, I do not have to be the victim of your profanities and I posted that link out of my concern.
Now I will quit posting and you can go back to talking about treatments!
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Dear Zimrie--
It is indeed true that I do not know you or anything about your personal struggles. And I'm no way was I trying to bully you. But you must realize, that to post a very unbalanced article about Xeljanz at a "deadly cost" with no comments of your own, would not be well-received here by any of us. We are all struggling. We have all experienced great pain and fear. And my sole purpose for this discussion page was and is for those of us taking Xeljanz to share our personal experiences on the drug--good and bad--so that we can support one another and continue to examine the research and future meds coming down the pipeline. We all know what the possible side effects can be. We read them on the label and discuss with our doctors and continue to get frequent blood work to make sure all is well.
I welcome you openly to share your story. That is what we are all here for. There is no motive to bully or scare one another on this discussion page. I have seen far too much of that on other discussion pages. It is not productive. It does not serve the greater good for anyone.
I feel your pain and fear from your response. I hope you feel it from the rest of us as well. If you seek our support here, do not hesitate to reach out further. My lengthy response about legislators and uninformed physicians was not directed at you. I was thinking about the great hurdles we alopecians face trying to get this drug approved so that we do not have to pay the outrageous fees to acquire Xeljanz off label. It is truly criminal on the part of the FDA and drug companies now that there is a mountain of research that demonstrates that Xeljanz works for so many (not all, but many). Those of us on Xeljanz can only wait until someone finally decides that we are not simply suffering from a vanity problem.
I hope you understand what I was comminicating. I do not want my discussion page to turn into a platform of fear. I want this to be a community of people from all walks of life who are here for one another and seek support and friendship.
--Susan
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