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 Antosslazio on July 21, 2016 at 3:45am

Hi everyone!

I'm Antonio from Rome 47 y.o. (Italy). I struggled half life against AA and now that there's something that could improve my condition is not available in my country!

I would to go in Turkey to buy Xeljanz, but political and social conditions are not safe enough at the moment.

in the picture like I used to be (I had been already ill but i was getting better) and like I am right now, with my wife. Sorry for the size of pictures but I couldn't make 'em smaller)

Could anyone, please, tell me how many pills are inside the bottle? How many pills must being taken each day? and the dosage?

Thank you very much

Permalink Reply by Susan McAdams on July 26, 2016 at 12:38am
Antonio--

You look fantastic in both photos! Fortunately for men, you can get away with the hair loss a lot easier. I know it must feel awkward to lose eyebrows, lashes, and body hair as a male as much as it does for women. Especially eyebrows, yes? We are so conditioned to see eyebrows on anyone. But, a bald head is considered quite attractive in today's culture. I have male friends who decided to shave their heads when their hairlines receded too much, and they look better and younger.

But, I am sure you are as eager as any of us to get your natural locks back. I hope you can either secure Xeljanz in Italy soon, or hopefully Turkey will be a safer destination in the near future. It is really scary to see all this political/social turmoil in the world right now for any reason!

In any case, you are a lucky man with such a beautiful wife. Thank you for sharing your photos, and keep up the hope!

--Susan
Permalink Reply by Antosslazio on August 8, 2016 at 5:00am
Dear Susan,
Thanks for your kind reply. Actually the problem are indeed eyes lash and eyebrows even thoug my youngest son doesn't want see me with hair!!
Anyway I heard about a Xeljanz cream. I wonder how much Xeljanz cream costs and if it's possible buying it from Italy.
Thanks a lot Susan.
Ps in the pictures my sons
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Permalink Reply by Susan McAdams on August 8, 2016 at 10:19am
What a beautiful young man! So funny that he would rather see you with no hair, considering those gorgeous, thick curls of his, but I guess kids like to stick to what is familiar to their lives, yes? I thought my three daughters would be SO much more enthusiastic and thrilled that my hair grew back. They barely comment on it. They got used to my wigs and hair extensions over 3 years until my hair was finally back. And of course, teenage girls are so self-absorbed that they rarely give much thought to what is going on in the lives of others. ;-)

Anyway, I got a prescription for the Xeljanz cream from the Compounding pharmacy in Philadelphia, PA that most everyone has used. My Stanford doctor (Dr. Ko) sent in the prescription, though with some reservation because he was not seeing much successful regrowth with the cream that was being compounded at this Phildelphia pharmacy. However, we are not aware of another pharmacy that makes the cream here in the USA. Does anyone else use another source?

The cream is about $300 for a tube that should last you 1-2 months if you are applying to small areas. A little goes a long way! And you have to really rub it in to maximize skin penetration. I apply my cream to 3 small spots twice daily. Two months later, I still have cream left. Thus, if you are considering the cream for eyebrows (I would not put it close to your lashes!) you could get a tube to last you 2-3 months. Don't over-apply!

For my, the I am definitely growing back the relapse spot above my front hairline that I wrote about a couple weeks ago. There are terminal hairs in the center of the circle patch--typical regrowth pattern. Plus, in the two stubborn spots in the bottom back, there are vellus hairs growing. There had not been any before I started the cream. I have never changed my Xeljanz pill dosage (still 2 pills per day at 5 mg each). The only things I added were a daily Vitamin D and Biotin supplement. I knew I had been low in my Vitamin D from precious bloodwork (as most people are anyway), but because several folks have been writing about Vitamin D deficiency in this site, I figured it couldn't hurt. And I have taken Biotin off and on over the years, even when not going through hair loss. It has helped strengthen hair and nails for me.

So, I think the cream has done me some good. But, be aware that it has not been working for all. Since it was "only" $300 for a tube (relative to the cost of pills), I decided to add it to my regimen while I recover from the small relapse I had at the start of the summer.

Keep me posted on your decisions. You can't beat having a nice set of eyebrows, yes?

--Susan
Permalink Reply by Antosslazio on August 9, 2016 at 5:55am

Dear Susan,

thanks again for your latest reply.

I'd like to try the Xeljanz cream. Unfortunately in Italy there's nothing about Xeljanz yet :-(

Today I'll phone to the Vatican's pharmacy and ask if they own it as they have differents drugs rather Italian's one.

As I was explaining to you last time, I don't care about hair (my younger son doesn't want - "I love you in that way dad. If you let grow up your hair I'll come to you in the night and I'll cut you all of it!":-D) but rather my eyebrows and eyelashes.

I could try the cream version and if doesn't work to go in Turkey and buy the pills.

For how long the pills must be taken? Do hairs fall down if the cure is stopped?

Do you think that the pharmacy you've mentioned to me, would sell and send the cream in Italy? It's so frustrating to know about a treatment and couldn't use it!

Bye for now (whenever you want you can be my guest in Rome and visit the most magnificent city in the world!)

ps the picture shows my younger son Tommaso. The older one is Federico.

Please, let's keep in touch.

Thanks

Antonio

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Permalink Reply by Felicia on July 25, 2016 at 11:06pm

I have RA and the funny thing is I started juicing and eating raw fruits and veggies and my body felt better so I got off the RA drugs right when my hair started growing in..I thought it was the diet but now it turns out it was the RA drugs. The hair that grew in is now gone. I am about to make another appointment  to see a new Doctor for my RA and see if I can get on the Xeljanz drug. I think I will start on my raw diet again too because of the harshness of the drug. The picture is of my hair that was growing in. Thank you so much for sharing your story..I will keep in touch to let you know of my progress also.

Thanks , Felicia

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Permalink Reply by Susan McAdams on July 26, 2016 at 12:48am
Thank you for sharing, Felicia. I hope readers have not misunderstood me when I have written about diet and vitamin supplements. I am certainly a proponent of eating clean and healthy for good health in general. I instill a healthy, balanced diet for my daughters and am proud that they are not into junk food and understand good nutrition. But as you have discovered, even the cleanest diet cannot cure alopecia or many other autoimmune diseases. It can help put symptoms at ease to a certain degree, but there is just no evidence that it is a cure-all. I hope you can get on Xeljanz and restore your hair and also control your RA symptoms. You are a beautiful woman--hair or no hair--but I certainly understand that desire to want your hair back! Good luck, and keep us posted!

--Susan
Permalink Reply by James 2me on August 22, 2016 at 4:19pm
Hi Susan. I was reading YOURE posts and found them very encouraging also YOURE hair looks great I am also in a simialer situation sudden hairloss leading up to universallis april 2015 started xelljanz March of 2016 after being diagnosed with RA. Facial hair started to comeback first after one month followed by arms and legs. The beginning of July which would be 3 and a half months I started seeing tiny white hairs on my scalp which are now a series of random patches of white hair at the same time my eyebrows and lashes grew in Black. My question to you is beings I am on Xelljanz Xr once a day 11 mgs. Do you think the patches will eventually fill in. I do not have the option to increase dosage beings it is perscbibed for RA maybe I should be more patient but this whole thing is frustrating I hope all is well with you. You're photos are awesome and I really enjoyed YOURE informative posts. (James2me)
Permalink Reply by Suzie on August 4, 2016 at 9:47pm

Felicia I too have RA.  I was on Orencia and did not have the AA at the time.  After taking Orencia I started losing some hair.  I did research on Orencia and saw that it could cause hair loss so I got off of it.  Started with a small patch on the back of my head....now I have shed so much and have many spots.  I am convinced the Orencia triggered it.  What RA medicine were you on?  I tried injections with a dermatologist and she never monitored my patches at all.  My rheumatologist swears  its not the Orencia.l  I have been on Enbrel and Humira and have had no problem, except they stopped working for me that is why I began taking the Orencia.  I am seeing a dermatologist at the Mayor Clinic in Minnesota in September and and looking forward to seeing what she recommends.  I am scared to take Xeljanz in fear I will lose more.

Permalink Reply by Susan McAdams on July 26, 2016 at 2:37am
Hi Readers--

I want to give a little update on myself, since I haven't done so in awhile. There is something I held off on sharing because I did not want to freak out a couple friends on this site who have been nervous about the concept of relapse. One, in particular, is a young man who went from AU to a full head of hair in 10 months and is about to embark on a whole new chapter of his life without the embarrassment of dealing with AU among his young peers. If he is reading, take a breath--it's not anything to freak out over...

Over Memorial Day weekend (late May), I was getting ready for a party, and I was shocked to discover a quarter-sized patch of hair missing right above my hairline on the right side. I had not noticed it because my hair parts over to that side and was covering it. It must have happened very quickly because I would have noticed it after a swim workout. In any case, I freaked out to see this relapse patch! I searched the rest of my scalp, but found no other new patches. Just that one spot.

The previous 6 weeks had been incredibly stressful for me personally. I was finishing a grueling architecture class that sapped me of a normal sleep regimen, and one of my daughters had an accident at a track meet which resulted in a mild concussion. I was extremely worried about her while taking her to doctor appointments and making sure she didn't fall behind with her schoolwork. And I also had a falling out with a close friend over a business venture gone sour that created more stress and ultimately ended our friendship. Overall, a heavy period of drama and stress and disruption to my normal routine. I was well-aware of what prolonged stress had done to me in the past with my alopecia. I lost all of my hair throughout 2013--arguably the worst year of my life on a personal front.

Anyway, I took action immediately. I called Dr. Ko at Stanford and had a long talk with him. He put it like this: Imagine that the Xeljanz is a fish bowl and your Alopecia is the water that fills it. During your stressful couple months, you were shaking the bowl. Naturally, some water is going to come sloshing out of the top. That, in your case, is this new patch of hair loss you just discovered. Does this mean that you are going to have a major relapse while you are still taking your Xeljanz at your normal dosage? Highly unlikely. You just need to get that fish bowl on stable ground by bringing your stress levels down to a manageable level.

I researched the hell out of possible relapse while one is on Xeljanz and has grown their hair back successfully with the drug. There are only a couple women here on Alopecia World who have written about relapse, but one had another health issue and the other also admitted to being under a period of high stress. I could not find anything from Dr. King's or Dr. Christiano's current research that discussed relapse while taking Xeljanz consistently.

I went to see Dr. Wendy Madkan in Los Angeles who took over Dr. Richard Strick's practice and has many alopecia patients on Xeljanz. She has seen no one else with any relapse. She concurred with Dr. Ko's assessment and also reminded me that people with other autoimmune diseases experience "flare-ups" of their symptoms when they fall into periods of high stress. I am sure many of you readers have friends with RA, lupus, MS, excema, etc. who have those stories to share. Even while on their respective medications. Why, then, would alopecia be any different?

So, I had Dr. Madkan give me Cortizone shots in that patch on my scalp. I also got a prescription for the Xeljanz cream, which I apply twice a day to the spot--as well as a stubborn spot at the bottom back of my scalp that never grew back over the past year while my hair grew back everywhere else--including brows, lashes and body.

Where am I now since late May (2 months since I found that rogue relapse patch)? When I went in for my second round of cortizone shots almost 4 weeks ago, Dr. Madkan could see that tiny hairs were already starting to grow back in the middle of the circle. And the patch did not get bigger. At that time, she checked my whole scalp and did not find any new patches. Today, I was at my other dermatologist for a facial, and she noticed not only continued regrowth on that patch, but she also spotted tiny hairs growing in that stubborn spot in back as well. Perhaps the Xeljanz cream is helping that spot, since I apply it there as well.

But the main thing is, I really committed this summer to reduce my personal stress as much as possible. I had a lovely trip to Bali with one of my daughters in late June, and I took the summer off from my coursework in my architecture/design program (I had to anyway because of a lot of travel on my agenda). I also let go of the bitterness I was feeling from that fallout with my friend, and I did a little "cleaning house" by letting go of a couple other relationships that were plaguing me and sapping me of peace.

It is not easy to actively reduce stress in one's life. We all have stress! Shit, with two teenage daughters and another one just about there, it is a challenge to keep it all zen. But, I now know how essential it is in order to keep my fishbowl on a solid, steady surface and not shake it up and splash anymore water around. I have also resumed my yoga practice, and swimming for me is a great form of meditation (while giving me some bitchin' lats to boot!).

One other thing I finally did was get an overdue mammogram. I had not had one in two years, but was terrified to go. If there had been a problem, I may have had to stop the Xeljanz. Yes, that is a stupid line of thinking! Mammograms are essential. But having just regrown my hair and feeling "normal" again over the past 6 months, I held out. Well, I had my procedure last week, and my results came back normal and clean. I won't be stupid about that again for the sake of vanity, but what a relief. And now, that is one less thing to stress out about.

So, friends, do not freak out about this little relapse story I am sharing. Just take it as a lesson to apply to your own lives. Alopecia is an autoimmune disease. And though doctors cannot definitively PROVE that stress can contribute to flare-ups or relapse of autoimmune diseases, we and our doctors know what it can do. It shakes up the fish bowl. So, let's all take a deep breath and figure out HOW we can reduce and manage stress in our lives. Maybe take a personal inventory of relationships and evaluate those that might be toxic. Find ways to relax--whether it be going out for a run, meditating, or having a couple glasses of wine and a laugh with friends and loved ones. And those of you with teenagers--Oof! What I do when they give me that eye-roll (that teenagers have perfected so well) is to chant in my head: Don't take it personally. Don't take it personally. ;-)

I wish you all peace and tranquility throughout the rest of this summer and going forward. And patience and hope for good things to come for those who are just starting their medications. We are all in this journey together. Let's keep up the support.

Best,
Susan
P.S.) Here is a photo of me in Bali with a new friend I made.
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Permalink Reply by Beth on July 26, 2016 at 8:41pm
Susan,
Thank you for sharing and documenting. So helpful!
Best wishes to you on your efforts to reduce stress!
Permalink Reply by Jiggybear on July 26, 2016 at 9:53pm
I have never heard of Xelijanz before being on this site. I will ask my doctor about it next month. Thank you for such a thorough update, it's most helpful.

I've got AA and recently had a biopsy for the first time to confirm things. My hair started falling out last September after just having spots here and there for 17 years. My treatment has always been steroid injections with a topical that have worked. In May this year I ended up wearing a wig as my hair came out quite a bit and I started to look "sick."

I'm hopeful that my immune system is "running its course" and will reset itself really soon but it's nice to know there are other treatments that work!

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