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 Frida Rupert on April 19, 2018 at 7:04pm

Lol no you were right. I always get confused who's talking to who on here! I'll have a look for the study. Patchesforlife posted it I think.

Permalink Reply by Kathy on April 19, 2018 at 11:41am
Nordic Naturals Ultimate Omega 2X-two per day (only this brand from them or Amazon for purity)
Vitamin D 1000mg per day
Claritin 12 hour non drowsy- morning & night
Men's Rogaine & Betamethasone morning & night
My Pharmacist also suggested daily pro & pre bionics-(Florajen & FOS powder)
But I think more than anything TOTALLY eliminating dairy (casein...all the types)was most effective.
And she said if you feel a cold coming on cached cooked mushrooms and take Elderberry. All about keeping the immune system stable.
Permalink Reply by Mashloum on April 21, 2018 at 9:15am

Hi Frida

So far my son started the 3rd week using 2.5 mg, 4-5 black routs shows with zoom considering he is AU for the last 4 years 

First week vomiting stopped, but since yesterday he has cough and runy nose 

Is it ok or shall I check for that

Permalink Reply by Frida Rupert on May 3, 2018 at 3:28am

So sorry for late reply Mashloum, not sure how I missed this. Is he ok now. Generally my rule with my kids is if the temp goes beyond 37.5-38 Celsius its doctor time. WIts xeljanz I would say stopping for a day or two to let him recover wouldn't put him too far back in his progress. With kids it's best to be cautious. Good signs that some roots are showing through already! Anyhow, again sorry I missed this. Hope he is better now. And generally I would just watch for fevers if he gets sick again. 

Permalink Reply by okan94 on May 3, 2018 at 8:42am

Does anyone use nalrextone and xeljanz together ? I'm thinking of using together.

Permalink Reply by Carlie on May 3, 2018 at 11:02am

I do, I've been taking the full 4.5 dose of naltrexone from the start about 8 months ago. Just started Xeljanz a couple of months ago. I have been very lucky with no side effects whatsoever. 

Permalink Reply by okan94 on May 3, 2018 at 12:58pm

Xeljanz is supressing immun system but ldn is sthrengthens immun system.Did Xeljanz is benefit for you ?

Permalink Reply by Carlie on May 3, 2018 at 5:36pm

I'm beginning to see a light cover of hairs all over my head and eyebrows, a few eyelashes. I've been taking the xeljanz about 6 weeks. I have a third month free from Pfizer and them I hope my insurance will cover. I will see my doctor in a couple of weeks and have her order it through my insurance, this way I will have some time to appeal if they won't cover it.

Permalink Reply by Frida Rupert on May 3, 2018 at 6:34pm

yay- awesome you are seeing results Carlie! Very happy for you! 

Permalink Reply by Frida Rupert on May 3, 2018 at 6:34pm

Yes I do. I think it helps. My understanding is that LDN is more a modulator then activator of the immune system (this could be wrong). Basically I think LDN helps with inflammation which in turn helps with the inflammatory aspect of alopecia. I take it more for my hashimotos though. I think it helped a bit with the alopecia too though.

Permalink Reply by Carlie on May 3, 2018 at 7:04pm

It's supposed to increase endorphins by tricking your body into thinking it's not producing enough. I guess, study what endorphins do for you to know more. It hasn't hurt, but I think the Kenalog shots are helping too. Anything to kick start the process. I asked my doctor to send in the order for xeljanz to my insurance even though I have another 7 weeks left. Trying to get ahead of any problems. My functional doctor has agreed to write a letter too if needed.

Permalink Reply by Kathy on May 3, 2018 at 7:33pm

I was told to see a Functional DR but my insurance doesn't cover. Do you think its worth it?

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