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 Xeljanzmiracle on February 19, 2016 at 4:59pm
Sam, Pfizer DOES approve Xeljanz for alopecia. They want people to try it for that purpose. That's why they are giving the discounts.
Permalink Reply by Jcortez05 on February 19, 2016 at 7:57pm
When I tried for Alopecia they wouldn't so I told them I had RA
Permalink Reply by Susan McAdams on March 29, 2016 at 8:10pm

Sam, if you are still having trouble getting Xeljanz through a pharmacy, feel free to privately message me. We can talk on the phone, and I will explain exactly what you need to do and say. I got my initial prescription through CVS Caremark Specialty Pharmacy, which is located in Redlands, CA. They process the RX and ship it to my local CVS where it then pick it up. I could have it mailed to my home, but I don't want the risk of having it get lost or taken out of my mailbox!

--Susan

Permalink Reply by Xeljanzmiracle on March 29, 2016 at 8:16pm
Susan, you should thoroughly read the replies on your thread. Sam said he started Xeljanz on February 18th.
Permalink Reply by Susan McAdams on March 29, 2016 at 9:10pm
Oh! Thanks for letting me know. I scrolled through and didn't see that post. I'm glad he was able to get the drug prescribed--it can be such a hassle!

--Susan
Permalink Reply by Sam on March 30, 2016 at 9:41am

Thank you Susan, for your willingness to share your experience.  As you are one of the few vanguards of our Xeljanz takers, I was curious about your update.  Its good to see your continuous improvement and gives rest of us much needed hope.  Thanks.

Sam

Permalink Reply by Susan McAdams on February 16, 2016 at 1:18pm
Hello All--

A young friend of mine on this site sent me this video, among others, related to Xeljanz (tofacinitib) and its future. Dr. King is responsible for getting me into the Stanford trial last year. Hopefully this video will be useful to some of you who still have a lot of questions...

https://www.youtube.com/watch?v=Yk15yMe3tx4
Permalink Reply by Sam on February 19, 2016 at 1:07pm

I started with the squaric acid (SADE) treatment starting in July 2015.  Had some success with significant growth until Jan 2016.  Then, hair fell out again.  See my sequential pictures Before SADE, With SADE, Before Xeljanz.  Before SADE, I tried steroid cream, steroid shots, Vytorin - but nothing worked.  I started on Xeljanz (5mg 2x/day) on 2/18/2016.

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Permalink Reply by Susan McAdams on March 29, 2016 at 9:02pm

Hi Folks--

I have received some messages from readers asking about my progress since I haven't made a significant post in awhile. So, I thought it might be time to update you.

 

In my case, I am doing just great! I have been on Xeljanz since February 2015 when I was participating in the Stanford Trial. After the trial ended, I stayed on the med, and I fly back up to see Dr. Ko every 3-4 months for a check-in as a post-patient. My next appointment is scheduled for the end of April. I always ask for new information about other patients, new research, etc. when I go, so if I learn anything new, I will share it here. 

My hair is growing in steadily. I love having short hair for the first time in my life--I never thought it would suit me, but I really like my new look. Plus, it is so easy! I have had highlights put in twice and plan to get them boosted a bit in a couple weeks. My hairdresser and I agree that we should take it slowly and cautiously, as we don't want to damage this hair that took me so long to get back! I still have two small areas on my scalp that did not yet come in fully. One is over my right ear, though it has been filling in more in recent weeks. The other is at the very bottom of my hairline in the back on the right side. It is sort of a half eliptical shape and is not really showing since the hair above it is covering it.

My eyebrows and eyelashes are basically back fully, though my eyebrows may be a bit thinner than they used to be. It's hard to tell because I got my brows tattooed by a terrific aesthetician in Tarzana, CA. She is regarded as one of the best in the country for facial tattooing. I go back to her every 6 months for touch-ups, as facial tattooing fades over time. I was there about a month ago. One can't really tell that I have the tattooing because my brow hair is right on top of it. Everything just looks nice and full. 

The rest of my body hair has come back, though not so much under my arms. Weird. That seems to be the one resistant place. Maybe I have about 40% regrowth there. But what woman wants underarm hair anyway, LOL?

By the way, I found this really good product from a company called Madison Reed. It is meant for touching up gray roots in-between visits to the hairdresser for color. The product comes in what looks like a pressed powder compact with what looks like a blush brush. The powder is hard and dry, and you can order it in a color that matches your roots. Therefore, for that weak patch above my ear, I just brush some of the makeup directly onto my scalp. It stays on all day and doesn't smudge. I have even done serious, sweaty workouts with it, and it doesn't run down my face or anything. If my head is sweaty and I wipe it with a towel, it may come off, but otherwise, it stays put. It doesn't stain, either. Therefore, if any of you have regrowth from Xeljanz and just need to cover up a few spots, I recommend checking out this product from Madison Reed. It lasts forever, too!

I have received some private messages on this site from people who are on Xeljanz and are having varying results. I know of at least two people who have been on 3 or 4 pills daily, but are just not getting lasting regrowth. One has switched to the topical, compounded cream. I am not sure if the other will try it. On the flip side, I have been in regular correspondence with a young man who went from AU (since childhood) to 100% scalp regrowth in 6 months. His eyebrows/lashes are coming in a little more slowly, but making progress. Plus, he just got accepted to college at both Julliard and Eastman for the fall. I am so happy he is on his way to begin a whole new chapter in his life without the anxiety of living with no hair. I have also heard from a reader of this site that Dr. King has over 100 alopecia patients on Xeljanz, and everyone is healthy. 

There are three key things that I have learned through communication with readers as well as my doctors. 

1. If you stop taking Xeljanz, you are most likely going to lose your hair again. That has been the case with just about everyone who stopped the med--especially before they reached FULL regrowth. Some start seeing shedding as soon as a few weeks, while others don't see it happen for 3-4 months. In any case, it is a chore to get it all back again. And one cannot tell how much hair will fall out due to the interruption in drug dosage. I have heard that some who went back to their regular dosage got regrowth again, but I can't say how long it took.

2. Some Xeljanz users are beginning to experiment with reducing their dosages. My doctor at Stanford would ultimately like to play around with that as well, but not until I have FULL regrowth. Since I have those 2 patches on my scalp and very little under my arms, I am not going there yet. However, some are doing fine with a reduced dosage from what they started with. But again, this is a slippery slope. You may not know if your immune system is on the attack until months in when you suddenly see shedding that you cannot prevent. We all know how the process works. Hair typically doesn't shed for weeks or months after an attack. So, it's a gamble.

3. Most important to note from all the posts on my discussion page and others is that EVERYONE IS UNIQUE! Some lucky patients had regrowth after the first month or two on Xeljanz. Others have not responded well even on 4 pills. I started to see regrowth at 3 1/2 months on 2 pills daily. I am still on 2 pills daily and will keep that protocol for now. There are just so many factors involved that make us unique in how we respond to the medication. Thyroid problems are typically an issue. Some post-menopausal women have had difficulties. Young patients tend to be reporting the fastest results.  And it's weird that there doesn't seem to be much correlation to whether one has AA or AU or how long. It all varies. My young, college-bound friend has been freaking out a bit over the posts coming from people who are not getting lasting results. But I think he finally understands that this is all an individual thing. He is one of the lucky ones. I, myself, am trying to remain very 'zen' about this journey. I have my hair back at present, so I'm going to live in the present and not fret about what "could" happen down the road. 

I finally have my LIFE back! I will post a couple photos below. They may not both load on this post---if so, I'll post the other separately. Last week, I went with friend to see my beloved Bruce Springsteen and the E Street band perform in Los Angeles. We had GA tickets on the floor and danced in a crammed crowd for almost 4 hours. I sweat my ass off. I shook my head around. I ran my fingers through my hair, and I felt GREAT! I wish this feeling for all of you out there. 

Peace and Love!

Susan

P.S.) My friend didn't mind that I Photoshopped Bruce's face over his in our photo in the crowd. Hey, a girl can dream, right?

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Permalink Reply by Return_life on March 29, 2016 at 11:00pm
Awesome post.
Thanks for taking that time. And btw yes short hair looks sexy on you
Permalink Reply by Xeljanzmiracle on March 29, 2016 at 11:34pm
You look beautiful Susan! Nice to see those lower lashes. Mine are just starting to come in.
Permalink Reply by Susan McAdams on March 30, 2016 at 12:42am
Damn. We don't realize how essential lashes are until we lose them! Hope yours come back longer than ever!

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