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 cws on August 30, 2016 at 9:15am
Permalink Reply by Cstarr on August 30, 2016 at 12:59pm
I'm finishing my third month on xeljanz and just got my blood work back, my cholesterol is high and white blood count is low. My doctor is wanting me to stop taking the medication. Has anyone else had problems with their bloodwork? Anyone know of something that may help? I would prefer to not stop taking the medication as it appears to be working but not at the risk of my health :/
Permalink Reply by Xeljanzmiracle on August 30, 2016 at 2:18pm
What type of diet are you on? Maybe changing that will help lower your cholesterol.
Permalink Reply by strawberry on August 31, 2016 at 5:55pm

Did you try talking to your doctor about trying something else before giving up the medication? For your higher cholesterol, you can try eating a lower fat diet. I'm not sure what can be done for white blood count though. I hope you can find a way around this.

Permalink Reply by Cstarr on August 31, 2016 at 7:56pm
I have an appointment next week, I am going to be monitoring what I eat and exercising because I haven't been recently. I am more concerned about the WBC. It is only slightly below normal but still those guys are important!
Permalink Reply by Football fan on August 31, 2016 at 11:17pm
My white blood cells are also slightly lower and I have been on xeljanz for over a year now and haven't been sick even one day!
Permalink Reply by Peachfuzz on September 1, 2016 at 1:27am

I remember you were a slow responder Football Fan, how are you getting on now?

Permalink Reply by Football fan on September 1, 2016 at 11:53am
Still slow!But still not ready to give up!
Permalink Reply by James 2me on September 1, 2016 at 3:50pm
How slow and what was you're severity at the start. I'm starting month 7 next week and it seems like all of a sudden things are really clicking.
Permalink Reply by DJ88 on September 1, 2016 at 10:49am

I was just searching somethings about having a low white blood cell count. I came across this link

http://renegadehealth.com/blog/2013/12/30/5-ways-to-increase-white-...

It basically mentions diet and some vitamins you could use to rasie your white blood cell count. Hopefully this helps.

Permalink Reply by Jcortez05 on September 3, 2016 at 10:13pm
I know there was someone here who stopped xeljanz bc she wanted to start a family but I forget her name ... Was just wondering how your hair has been since stopping ?
Permalink Reply by katiegirl on September 3, 2016 at 11:02pm
Hi all it may be me your referring too. Sorry I haven't updated everyone. It has been almost three full months off the medicine. No scalp hair loss to date. I did notice my eyebrows have been thinning but nothing too extreme. Hope it stays this way really not going to be able to restart the xeljanz at this time. attached is a recent picture of me I am the one on the left with the short hair obviously lol
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