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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Replies to This Discussion

Permalink Reply by Sp06 on March 8, 2016 at 4:44pm
Hmm, I wonder why legs don't respond well...
Permalink Reply by serg navaro on March 8, 2016 at 4:46pm
SPO6, are you doing anything else besides xeljanz? I just started month 5 and I too have a lot of regrowth but not as much as you, any vitamins or shampoos I should be using? Thanks for any advice anyone can provide.
Permalink Reply by Sp06 on March 8, 2016 at 4:49pm
Yes I take 5000 IU of vitamin D and 5000 mcg of biotin everyday along with 2 pills of xeljanz. And I use regular shampoo, nothing special lol.
Permalink Reply by serg navaro on March 8, 2016 at 8:02pm
Awesome, thank you, is there a certain brand you would recommend?
Permalink Reply by Sp06 on March 8, 2016 at 9:17pm
Lol I don't think brand makes a difference, but I use "Nature Made".
Permalink Reply by Beth on March 8, 2016 at 10:16pm
Sp06,
So happy for your regrowth! Please be careful not to overdose on vitamin D. It is stored in your body, extra is not excreted like other vitamins. The alopecia studies on vitamin D have to do with other mechanisms of absorbancy.
Permalink Reply by Sp06 on March 8, 2016 at 10:29pm
Thanks Beth! My endocrinologist told me to take 5000 IU because I'm very deficient in vitamin D. I've been taking this dosage even prior to xeljanz.
Permalink Reply by Sp06 on March 8, 2016 at 4:51pm
Do you guys have any questions that I could ask dr king for you since I'm going to see him soon?
Permalink Reply by Starshine on March 8, 2016 at 8:15pm

Sp06,could you ask Dr. king what his thoughts are about decreasing the dose or a maintenance dose once all the hair is back, or is this a forever treatment. Thanks.

Permalink Reply by Sp06 on March 8, 2016 at 9:17pm
Yeah, I'll make sure to ask him that.
Permalink Reply by cmdd20 on March 8, 2016 at 10:02pm
Would you mind also asking him about where things stand with the topical ruxolitinib?
Permalink Reply by DJ88 on March 9, 2016 at 1:11am

Sp06,

I was thinking, You could ask Dr. King When will Xeljanz be available to Alopecians via Health Insurance or by other means. Also, would you say this is a long term or short term treatment?

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