Xeljanz (Tofacitinib Citrate): My experience on the trial

I have received a lot of interest from others on here in my involvement with the Xeljanz trials at Yale.

I thought it would be nice for everyone if I documented my progress on here. 

Xeljanz is a Jak3 inhibitor and is believed to work with alopecia by turning off the distress signal relayed by the hair follicle to the attacking immune system which is the cause of the hairs falling out. Xeljanz comes in a strength of 5mg per pill and a full box contains 60 tablets. The recommended dosage for arthritis is 1 tablet in the morning and another in the evening each day.

The trial is set in a series of stages and there are requirements before participating. These include monthly visits and blood tests every 2 weeks. Dr Brett King is absolutely fantastic and is an inspiration to me. His positivity and enthusiasm gives me the much needed hope I have craved for over a decade. I have been put on a low dose to start with which is 1 tablet every other day. My dosage has now been increased to 1 tablet every day and next month it could be increased to 2 tablets per day depending on the results. 

I have completed my first month and have already noticed my alopecia has stabilised . I have not lost any existing hairs. In addition to this I have seen little hairs growing in my chest area as well as eyebrows. Fingers crossed! To date, I have experienced no side effects.

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AW:  Other discussions on Xeljanz / Tofacitinib

https://alopeciaworld.com/main/search/search?q=Tofacitinib

 

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Permalink Reply by kimberj on January 22, 2017 at 10:48pm

Hey Football Fan. I'm sorry to hear all your efforts have failed! Just like Rascalx2 said, "Reality starts to creep in". I am so tired of the roller coaster ride and I just need to accept this but I just cant seem to. I am very happy to have regrowth but I know all to well that it could just fall out again tomorrow. Sometimes I feel like it is too hard to get it back only to lose it over and over again. Do you plan to continue taking Xeljanz?

Permalink Reply by Football fan on January 22, 2017 at 10:55pm
Think I will just stay on twice a day.Afraid if I go off I will lose my eyebrows and eyelashes.Still have about 25 percent of my hair but that's what I had when I started xeljanz.
Permalink Reply by HS on January 22, 2017 at 11:02pm

Hi Everyone, here is some more  information about what I've been taking/doing:

I started completely bald, no eyelashes, etc. I started on Xeljanz only on 7/2/15. I saw growth within a month. The growth was exciting to me but VERY slow and very frustrating. I had ONE solumedrol (prednisone) infusion in March/April of 2016. I also started seeing a new dermatologist at that time who started with kenalog injections for my eyebrows and scalp (she won't do my eyelashes, although I had those done when I lived in Los Angeles and that helped me.) In June 2016, my doctor added Plaquenil 400 mg a day, and that is what really kicked up the growth. So I'm a combo of Xeljanz 5 mg, 2x day; Plaquenil 200 mg, 2x day;10,000 mcg of Biotin daily; and Kenalog injections  every 4 weeks. I've played a bit with Clobetasol foam and also Latisse,  but I swear  those two are an interaction for me and every time I use them, my hair starts to fall out again. I have had a full set of blonde/brown eyelashes and 90% of my eyebrows, but recently they are falling out again. My hair is definitely shedding, but I am simply not panicking. I'm accepting that it will fall out but it will come back. It's been seven years for me since my hair fell out altogether, so I'm pretty okay with it now.

Also, a couple of things that may help:  my primary doctor is a rheumatologist, and my diagnosis for insurance is Ulcerative Colitis and Alopecia. My insurance pays for the Xeljanz. Also, I saw my doctor last week and he said that the FDA is approving Xeljanz for psoriasis and colitis (inflammatory bowel disease) mid-2017.  I hope that is helpful!

I did ask my doctor if he would increase my prescription for  Xeljanz  to 20 mg a day but he is not wanting to do that.  It's not FDA approved for  20 mg a day. I've noticed that other members here do take 20 mg a day, do you know how your doctor was able to get  that approved?
that's  all for now, thanks to all of you for sharing your stories here! I learned about the Plaquenil here from another member, so I'm very appreciative!

Oh, and I've had only ONE bad cold since I started taking Xeljanz. Also, I did gain weight (20 lbs) but I also have not been careful with my diet at  all. I've recently really stepped up portion control and I'm down 11 pounds while on the medicine. My blood work is up-to-date and  very good.

Heather

Permalink Reply by lu391 on January 31, 2017 at 3:06pm

I read that it was also approved in Europe Xeljanz    26 January 2017

European Medicines Agency - Human medicines - Xeljanz

 

Permalink Reply by Alo-mom on January 31, 2017 at 5:47pm
For alopecia??
Permalink Reply by singh on January 31, 2017 at 5:50pm
Great find ! I heard baricitinib will be getting approved in the EU this year too. Although it will be for arthritis
Permalink Reply by LIU CHUNXIU on January 31, 2017 at 6:07pm
is barcitinib approved by fda already? what is the price?
Permalink Reply by singh on February 1, 2017 at 2:12pm
Hey LUI, no it's not approved but it's likely to get approved this month or within the next few with the FDA and Europe to follow.

Not sure on how much it will be.. Hopefully cheaper than xeljanz as it will be is competition.
Permalink Reply by sultan h on February 1, 2017 at 4:06pm
I don't think so , it will be much expensive than xeljanz,
But hope better than xeljanz for whole people how suffering from alopecia that' all we have no matter the price and we worried only the side affects


Thanks all
Sultan
Regards
Permalink Reply by IcarusAlopecia on February 1, 2017 at 11:55am

Hi All.

I started Xeljanz 5 mg twice a day 3 weeks ago today.

Xeljanz

So far I have had no side effects. Everyone in my office has a cold/flu/etc since November and will till March. I did catch a sinus infection but it seems to have gone away in 4 days (I self treated with garlic,apple cider vinegar and neti pot-ing).

I have not noticed no weight gain. I do run 5x per week and I eat low carb. I'm hoping that will be enough to 

My AA Status:

I ave AA for 9 years. It comes and goes but is usually worse in the winter. I have been getting steroid shots for 9 years on my scalp and eyebrows.

Currently, the back is really bad but I can cover it with my existing hair. My eyebrows have fully grown back in the past few weeks but I did get cortisone so I'm not sure that it's due to Xeljanz.  My eyelashes on one eye is fine the other eye only the top corner is missing.

I shed a ton, everyday. I have thick hair so I guess i have some to spare :)

Outlook

I see my dermo on Friday. I'm fine with staying on Xeljanz for the 3 months to see how it goes as I don't feel any different. My lifestyle hasn't changed either. I have  had2-3 glasses of wine at a dinner the other night and I didn't explode, so, yay.

Some photos attached!

They are not very good and I promise to take better ones later. I think photos can really help people deciding whether to start a treatment.

One photo is from September. I had come back from 3 months in Europe. I had stopped shots and stuff and my alopecia got really bad.

The other photo is from January 27. You can see lots of white/grey regrowth now that I am back on track with shots and now xeljanz

Attachments:
Permalink Reply by bibby on February 2, 2017 at 2:07am
Wow. I'd kill for that much hair haha. It looks like you are close to 100% regrowth. In the interim though have you heard of dermatch ? It's a concealer and would add some great volume to the hair you have now.
Permalink Reply by IcarusAlopecia on February 3, 2017 at 8:01pm

Thanks Bibby. I'll try it. I haven't thought of it as I use my existing hair to cover my patches. How is dermamatch when its really windy?

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