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 Xeljanzmiracle on February 11, 2016 at 12:06pm
Sounds good to me! Even tho Xeljanz is working GREAT for me, with no adverse side effects, I understand the safety risks in the long term. Will be posting updated pictures soon after my next Doctor's appointment.
Permalink Reply by Football fan on February 11, 2016 at 1:41pm
Happy for everyone that is growing hair on xeljanz but it is just not working for me.Even on 3 pills a day and adding plaquenil.Im not giving up started using the xeljanz cream on Monday.Hoping when the Baricitnib comes out I will have more success with that.I have been on Zeljanz for 9 months and not one cold even though everyone in my family have been sick at least twice (And a 4 year old sitting on my lap and coughing in my face).At least I still have eyelashes and most eyebrows.Was hoping this summer to be without a wig last year in Los Angeles with 2 months of 100 plus heat was not very comfortable.Im going to stay positive there will be something new to try that will work on me!
Permalink Reply by Aurora Sophie on February 11, 2016 at 1:48pm

Hi

My daughetr has just started on the medicine, Xeljanz,10 days now.

She has lost eyelashes, eyebrows, I am so sad, she is so sad,t I just hope the medicine will help her soon.

I thought it was helping everyone, just that it sometimes takes more time.

I dont know how to take care of her, and her sorrow, I feel so sad and helpless.

Permalink Reply by Sp06 on February 11, 2016 at 4:45pm
Dont worry, give it some time and im sure she will have her hair grow back, its only been 10 days. Try to stay optimistic and hope for the best.
Permalink Reply by Aurora Sophie on February 14, 2016 at 12:50am

Thanks,

I will try that, but she is so sad and impatient now after the eyelashes and eyebrows also disappeared.

  

Permalink Reply by Sp06 on February 14, 2016 at 1:10am
Im 16 years old, almost the same age, i know firsthand how your daughter feels. Being in high school sucks in itself, but with the addition of this disease it's even worse. Tell her to stay positive, im sure everything will turn out fine.
Permalink Reply by Aurora Sophie on February 14, 2016 at 1:27am

Thanks :-)

It means a lot just to read that someone understands her.

The doctors we have been to here in Norway have had no empathy.

So we look forward to travel to U.S and see dr King :-)

Permalink Reply by Football fan on February 11, 2016 at 7:41pm
I am sure your daughter will respond and grow hair I'm just a weird exception.Were all rooting for her.This is a very devastating disease.Its not life threatening but life changing!
Permalink Reply by Aurora Sophie on February 14, 2016 at 12:55am

Thanks

Yes is it devastating :( 

And I just think it must be the most horrible time to get this disease when you are in a the vulnerable teens.

Have you had any side effects? She has felt nausea and tired some days.

Have long did you take the medicine? And did you also use the cream?

Did you by the medicine in U.S?

Permalink Reply by Football fan on February 14, 2016 at 11:47am
No side effects at all not even a cold I have been taking Zeljanz for 8 months. Just started the cream 6 days ago.While your here get the cream also its$300.Slight tingle and itch when you put it on.Im not giving up.Good Luck!
Permalink Reply by Sp06 on February 11, 2016 at 4:31pm
Here are my 2 month pictures:

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Permalink Reply by Sp06 on February 11, 2016 at 4:37pm
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