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 singh on October 3, 2015 at 7:02pm
DJ88 are you taking xeljanz mate ?
Permalink Reply by Sp06 on October 4, 2015 at 12:48am
Ya that's a good point, I should have asked her abt that. I will try to ask her abt soon. Maybe I can get my hair back with xeljanz and then maintain it with a gluten free diet. I know for a fact that xeljanz works so I rly wanna give it a shot. I've researched online and gluten is huge cause for many people's alopecia, so I will definitely eat a gluten free diet from now on, hopefully that might help as well.The only problems with xeljanz are the cost and potential side effects. Have you or anyone else in this discussion experienced anything major in terms of side effects?
Permalink Reply by cws on October 5, 2015 at 8:27am

I think there was one member on here that had some gastro-intestinal issues and had to stop. This is a possible side effect. For the most, the drug is safe. If you find yourself getting sick a lot I would not continue it. I think if we can get all our hair back and then do a maintenance dosage of 1 pill a day or less the safety factor is drastically improved. You can try the gluten but I believe they had clinical trials on that and did not find it to be a factor.

Permalink Reply by Xeljanzmiracle on October 5, 2015 at 9:17am
I was gluten free for 6 months and none of my hair grew back, but it started growing back after ONE MONTH on Xeljanz. I try to stay gluten free the majority of time, because it gives me asthmatic symptoms & affects my respiratory system. But I don't think avoiding it was going to lower my immune system ENOUGH to go from being AU to having all my hair back. Maybe it's more effective with AA, when total hair loss hasn't happened yet, I dont know For sure. But I agree with DJ88, start the Xeljanz ASAP.
Permalink Reply by katiegirl on October 5, 2015 at 8:44am
My liver enzymes were mildly elevated but that was when I was taking 3-4 pills a day. I am down to 2 pills a day and all blood work has been normal since. There are potential side effects but in younger people the drug is relatively safe at least that's what my rheum told me.
Permalink Reply by Starshine on October 5, 2015 at 9:42am
Just saw my derm last week and I now have 90 percent regrowth. I was one of the ones who had a very slow response, but since upping to three a day two months ago, the results have been amazing. My doctor was amazed as well and stated that I was his only patient on Zeljanz, but would now recommend it to others. I think the more doctors we can get on board with promoting Zeljanz, the better. I am going on eight months since I started. I have full coverage, but it is still mostly white and just starting to get some dark areas. I hope this gives hope to those who are still struggling.
Permalink Reply by lu391 on October 5, 2015 at 10:21am

someone who bought xeljanz turkey, managed to get back the money of the tax refund?

Permalink Reply by Sabri on October 5, 2015 at 11:28am
It's 8% tax in turkey.
Permalink Reply by Xeljanzmiracle on October 5, 2015 at 12:13pm
Has anyone tried the Xeljanz in Turkey to see if the efficacy/potency is the same?
Permalink Reply by Xeljanzmiracle on October 5, 2015 at 10:52am
Congratulations! I'm the first one UCSF has treated with Xeljanz too. My doctor is SO EXCITED HE wants me to participate in Grand Rounds and an Alopecia Conference.
Permalink Reply by Starshine on October 5, 2015 at 10:59am
That is really exciting Xeljanzmiracle. Anything we can do to bring more awareness to promote Xeljanz for our condition is great.
Permalink Reply by Xeljanzmiracle on October 5, 2015 at 12:04pm
Thank you Starshine, I'm happy and excited for you as well. Do you have any current pictures to share?

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