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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Replies to This Discussion

Permalink Reply by Xeljanzgirl on April 13, 2018 at 7:30pm

Hi everyone,

I was on 5mg of Xeljanz 2x a time for over a year, I reduced it to once a day in January. All was going well but a few weeks ago I began shedding a lot and I developed 3 new spots. I bumped my dosage back up to 5mg twice a day about a week ago.

I am really hoping this slows down the shedding ASAP, as my spots are continuing to grow and grow. Does anyone have any insight or experience with this?

Thanks..

Permalink Reply by Mary Jane on April 13, 2018 at 9:23pm

We wish you all the best of luck and work together to overcome it!

Permalink Reply by Susan McAdams on April 13, 2018 at 9:33pm
I trust you will rebound as I did after having a small relapse due to a slight dip in my dosage. Unfortunately, the research is showing that once patients find a dose that works, we pretty much have to stick with it. Hopefully more drugs will come along in the next few years, but at least many of us have found one that works. Good luck! You will recover from this!
Permalink Reply by Xeljanzgirl on April 14, 2018 at 1:00pm

Thanks so much for the vote of confidence! Do you mind telling me how long it took from when you bumped your dosage back up to when the shedding slowed down and the spots starting filling in again? Did it get worse before it got better?

It took weeks and weeks for the spots to appear, so I’m assuming it will take just as long for this shedding cycle to slow down with the increase of my dose.

Thanks again :)

Permalink Reply by Susan McAdams on April 14, 2018 at 1:14pm

I will estimate it took a good 2 months (8 weeks) from the time I was cutting my dosage until the time I noticed a relapse spot. My doctor said that is the expected time frame, as it takes a while from when the hair gets attacked until it actually falls out enough that you notice a spot. So, your timing seems consistent. I caught my situation pretty quickly before it spread and rushed to my dermatologist to get monthly Cortizone injections until things were growing back. Maybe talk to your doctor and see if that will slow the relapse down?

Permalink Reply by Xeljanzgirl on April 14, 2018 at 1:33pm

I will call him after the weekend and talk about getting some injections in the "spots". I saw him last week and he seemed to think that just going back to my original dosage would settle things down and create re-growth.

How long did it take for you to see re-growth in your relapsed areas?

Thanks Susan!

Permalink Reply by Mohit on October 26, 2018 at 7:48am

Hi All,

I was suffering from Alopecia Areata from 3 years, now regrowth has started and I am getting my hairs back.

I was frustrated, tried every treatment in the past. Had more than 15 patches on all body, 1 big patch on my beard which covers almost half of the beard, 2 patches on chest, more than 10 patches on head. Now all patches are almost filled. Although I can still some hair fall on the floor. 

I have written a blog with my experience with my images. I hope this will help others as well.

http://shareownxp.in/healthcare/ 

I would be happy to help in case of any questions.

Permalink Reply by singh on February 11, 2019 at 1:20pm

Hi Susan,

How are you getting on ? How is your regrowth ?

Kind regards 

Singh.

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