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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Related Post on Alopecia World:  

Xeljanz / Tofacitinib

Olumiant

Jak Inhibitors

 

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Permalink Reply by kevin on June 4, 2018 at 5:41pm

And

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Permalink Reply by Frida Rupert on June 4, 2018 at 7:55pm

That’s great growth. Very quick too. Are you finding the betamethasone helpful?

Permalink Reply by kevin on June 4, 2018 at 10:31pm

Frida precisely I will tell my doctor to prescribe it I always had a good response to the steroid

Permalink Reply by kevin on June 4, 2018 at 5:22pm

you will not teach me what I already know I had herpes in the mouth after two months I followed a treatment after 2 weeks I left, I did a lot of Acne research The herpes cholesterol increase is a common side effect. I have my blood test is all is good so if you are on xeljanz is that you are following you should know it. if this is not the case, refrain from giving bad information. thank you

Permalink Reply by Carlie on June 5, 2018 at 10:48am

Yes Kevin, I understand it is a common side effect, if it is already in your bloodstream.  All I am saying is that Xeljanz does not give you herpes but you are more likely to have a break out while taking it. I have found that cholesterol supplements really help lower the cholesterol. I went from 239 to 161, being the 239 before I started Xeljanz. In fact my blood is better than ever but I attribute that to all the supplements and good diet. That's great growth, and actually terminal hairs are the best to see! Thanks for posting your progress.   

Permalink Reply by Lindzzej on June 5, 2018 at 4:17pm

Hey Carlie, my cholesterol has been higher since I started Xeljanz, what cholesterol supplements are you taking to lower it?

Thanks!

Permalink Reply by Carlie on June 5, 2018 at 4:27pm
Nature Made, CholestOff,Complete Softgel w. Plant Sterols & Stanols 120 ct
I bought it on Amazon.
Permalink Reply by Lindzzej on June 5, 2018 at 6:17pm

Thank you!

Permalink Reply by kevin on June 5, 2018 at 6:58pm

Tx good luck

Permalink Reply by kevin on June 5, 2018 at 7:00pm

yes I hope in a year to have at least a good regrowth even if it is not complete but acceptable

Permalink Reply by DJ88 on June 4, 2018 at 5:44pm

As of today have anyone gotten any really serious side effects from xeljanz on this forum?

Permalink Reply by kevin on June 4, 2018 at 5:57pm

dj yes finally it could become serious it was at the level of the stomach because may have a perforation of the stomach it was people followed for the pr done your search on google you will find all type side effect xeljanz forum and look through you even . the best way to hang xeljanz is to be in good health and to pay attention to your diet and to be followed by a doctor as soon as I have an unusual thing I make an appointment dear my doctor

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