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

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Permalink Reply by Susan McAdams on August 30, 2016 at 4:30pm
Seahawks Dad--

I am so happy for your daughter's progress to date! I have been in contact with a few young people on this site, and although we all share very similar pain, frustration and depression over this disease, I also understand that I cannot fully comprehend what this must be like for someone who is just getting his/her life off the ground. I was in my late 30's when AA struck--married (at the time, at least), three beautiful daughters, a community of friends, and the financial resources to search for answers and treatment. It is so unfair for a young person to go through this! And any legislator or physician who just wants to cover his/her ass by claiming that alopecia is a superficial, "cosmetic" disease--well...I'd love to shave that person's head and eyebrows off in his/her sleep, and then watch that person try to live life as it always was.

Human beings are visual creatures. We gravitate toward what we perceive as "the norm," and we use mental heuristics to make brisk negative assessments about strangers who do not fit our preconceived notions of what is the "norm." This does not necessarily make us grossly superficial or mean-spirited (though there are plenty of people out there who fit those extremes). Avoidant and even fearful behavior can be traced to our evolutionary past. Anyone who has taken a basic class in social psychology knows what I'm writing about here. The bottom line is, looking "different" than the "norm" is a daily challenge. Even if there is nothing about us that renders us ill or could harm others. And when you factor in the potential for human cruelty, living outside the "norm" can be isolating and devastating without a strong support system.

I sometimes feel infuriated by people--particularly trained physicians--who discount this disease as an unfortunate, yet superficial problem. Especially after having comminicated with alopecians who have considered suicide. Or young folks who wonder if they will ever find love. Or intelligent professionals who fear that they may lose job opportunities because of their appearance. How dare anyone tell us we are superficial and stupid to consider a medication with potential (albeit low-risk) side effects for the sake of vanity? I tell that person: Go shave off every hair on your body--even your pubes while you're at it--and live our lives for a week. A month. A year. Then, come back and report what you learned about basic human behavior.

PHEW! I needed that rant. Thanks for tolerating it. Yet again, Seahawks Dad, I am just so happy for your daughter. That she gets to be "her old self" again. We are so lucky we have options now.

And for those who are still struggling, I'm posting below a link to an article that was recently posted on ADML's discussion page. About the future of treating autoimmune disease. There is still a ways to go in this approach, but it is encouraging news, nonetheless.

Peace!
Susan
Permalink Reply by Susan McAdams on August 30, 2016 at 4:31pm
Permalink Reply by Seahawks Dad on August 30, 2016 at 6:15pm

Thank you for articulating what all of us feel...so grateful to have this community to share our experience. As a Dad...I would walk through miles of broken glass just to provide one normal day for my daughter. Through Dr. King and through the Grace of God above...our prayers were answered. But I also know there are many more individuals who can not afford the high costs of this medication. We need to direct our united voice to help pave the way for people behind us who are now considering this medication. I truly feel we are at a tipping point and that science is closing the gap on a cure. Until then...Xeljanz is our treatment of choice. It's my daughter's first day of school today and what a difference a year makes. So happy for her and what lies ahead. You are all in my prayers. Keep your chin up and keep fighting.

Permalink Reply by Suzie on August 30, 2016 at 6:27pm

Seahawks Dad 4, did your daughter have total hair loss or patches?  How is the length after taking Xeljanz for 1 year?

 I have several patches and a lot of thinning and I am considering trying Xeljanz.  I went through this at age 15 but lost mostly the back bottom of my hair.  It grew back on its own because that was 35 years ago and my mother just took me to our family doctor and not a dermatologist.  It probably wasn't as common back then because the doctor had no clue what it was.

Permalink Reply by Seahawks Dad on August 30, 2016 at 7:20pm

My daughter had total baldness on top of her head and eyebrows...she had a few eye lashes. We traveled to the Mayo Clinic in Minnesota and they put her on Methotrexate for a year...not much success some patches and light hairs but nothing substantial. We were lucky to get an appointment with Dr. King and flew to Middlebury in June of 2015. After wrestling with the pharmacy we were able to start her on Xeljanz in July 2016. It literally took about 4-6 weeks to get her eyebrows back. She was putting on latisse as well. Somewhere around 2 months time her hair started to come in full force. After one year I would say it's at her shoulders. She was able to take off her hair piece earlier this Spring. That was a VERY cool day in our house. She is on a maintenance dose of 2 pills a day and get her blood tested every 8 weeks. Each person reacts different...but I would say go for it. 

Permalink Reply by Suzie on August 31, 2016 at 10:54am

That's awesome news for your daughter Seahawks Dad!  I can relate to your daughter as I lost a lot of my hair when I was 15 and it is a very difficult time being a teenager as it is and the hair loss just makes things worse.  I, too, have an appointment with the Mayo Clinic in Minnesota, but now I am second guessing it because I don't want to try Methotrexate.  I have been on numerous autoimmune suppressing drugs (Enbrel, Humira and Orencia) because I have RA and I believe Orencia triggered my alopecia this time since my hair started falling out only 5-6 months after treatment.  I will talk to my rheumatologist and dermatologist about Xeljanz and see what they say.

Permalink Reply by singh on August 30, 2016 at 7:44pm
Wow how beautifully put Susan! Well said and so true ! And congratulations on your daughters progress Seahawks dad ! :)
Permalink Reply by DaveW on November 1, 2016 at 9:18pm
Wow, really well done rant! Those details of life's outlook from a person with alopecia are spot on. Having lived with it since age 7 to 53 now I've run the gammit of emotions. A friend of mine recently found out he had cancer. His first reaction was tears from the thought of loosing all his hair. Nuff said.
Permalink Reply by Sam on August 31, 2016 at 2:04pm

My story... 52M. Started with dime and quarter size spots for few years, starting around 49-50.  No big deal as they were being covered up by rest of the hair.  Coincided wth a family member illness and passing, these spots got bigger and eventually shaved head at 51.  Numerous steroid injections but no help.  My local dermatologist was out of options, and suggested to go see a dermatologist at Johns Hopkins Hospital.  At JHH, we continued with conservative topical lotions, prednisone treatment but no help.  We then tried Squaric Acid treatment.  Some success but very painful and very irregular growth and eventually all fell out. Early 2016, we considered Xeljanz and started on Feb 18, 2016, 2x/day.  See after ~3 mos. and ~6 mos. after Xeljanz.  Latest blood check shows slightly lowered white blood cell count, but clinically insignificant.  

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Permalink Reply by Suzie on August 31, 2016 at 2:23pm

Wow! That's wonderful!  So happy for you!  It seems like Xeljanz is doing great things for some people!

Permalink Reply by Xeljanzmiracle on August 31, 2016 at 2:47pm
Amazing Sam, so excited for you!
Permalink Reply by lindadarnell on August 31, 2016 at 2:34pm

Hello All:

I haven't checked in in a while.  I had my appointment with Dr. Ko yesterday and he increased my Xeljanz to 4 pills a day.  I've been on 2 pills a day since December 2015 and have re-growth all over but the top of my scalp is still very sparse and coming in very slow, probably due to male pattern baldness which runs in my family except I'm the only female to have it, lucky I guess!  He thinks the increase will give it a boost and help fill it in like the rest that is growing really well.  I'll try to post pictures soon.  Glad to hear that everyone is having such good success!

Linda

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