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 Ahmed on October 15, 2019 at 1:44pm

Hey everyone. I have now been on tofacitinib for 6 months and wanted to share my progress photos. A little background, I first noticed my alopecia in October of 2017. By December 2017 I had full AU.

I've been taking 16 mg of Tofacinix from Beacon everyday since April 15, 2019. I take an 11mg tablet in the morning around 9am and then a 5mg tablet at night around 10:30pm. During my first three months, I was also taking a 1000 IU Vitamin D tablet each day. During the next three months I was taking the 1000 UI Vitamin D tablet and a 10,000 mcg Biotin tablet. I made no changes to my diet and go the gym to exercise two days a week.

I am hoping for full regrowth at 9 months. I will hopefully try to post another progress picture update at that time.

Also, I wanted to give a huge shout out to Nat who lent me a couple boxes of Tofacinix while I was having issues ordering from Beacon. You're the best!

Permalink Reply by Scott James on October 15, 2019 at 5:45pm

Hi Ahmed,

Delighted for you ! ... A truly inspirational success story.

A few questions .....

Do you take the Tofacinix with or without food ?

What brands of Vitamin D & Biotin do you take ? ... Do you also take these with or without food ?

Permalink Reply by Ahmed on October 15, 2019 at 6:55pm

Thanks Scott! I take the 11mg Tofacinix, Vitamin D and Biotin with food. I don't take the 5mg Tofacinix at night with food.

I have posted Amazon links for the Vitamin D and Biotin below:

https://www.amazon.com/dp/B01J2ZA760/ref=cm_sw_r_cp_apa_i_7ZKPDbEF9... 

https://www.amazon.com/dp/B00T56FQAE/ref=cm_sw_r_cp_apa_i_Y0KPDbA4Y...

Permalink Reply by Scott James on October 16, 2019 at 8:40am

Thanks for info Ahmed !

I'll keep an eye out for your next update at 9 months.

You must be buzzing after experiencing such a positive result.

Permalink Reply by Ahmed on October 16, 2019 at 10:40pm

Definitely! I was so worried when I started that I might not respond. I thought the chances of getting alopecia were slim and it developing to AU was even more slim. This had me wondering if my luck was so bad that I might not respond. But thankfully I am! Hope everyone here who is just starting gets the same results :)

Permalink Reply by Newjack on October 15, 2019 at 6:37pm

Looking great!

Permalink Reply by Ahmed on October 15, 2019 at 7:01pm

Thanks Newjack! How are things going with the one spot you developed? Also, are you still seeing Dr. Bordone? I have another appointment scheduled with her at the end of this year but was wondering if it's worth it or not. Seems like everytime I go they just tell me that my progress looks good and to keep taking the medicine. I'm considering going one more time so she can go over my bloodwork and then stop going.

Permalink Reply by Newjack on October 16, 2019 at 9:26pm

Very similar situation with me, but Dr. Bordone had fought for me and I love her. She doesn't do as much blood work as I would like. My last work up was in July, I see her next week and will ask for it. My ldl went up a lot and she didn't seem concerned. 

My spot is filling up real slow but the last 2 weeks it's really made a change!

I see Dr bordone every month since July because of my spot but normally keep it to every 3 months. 

Permalink Reply by Frida Rupert on October 16, 2019 at 5:56pm

That is great Ahmed! I love how this Med can change our lives! 

Permalink Reply by Ahmed on October 16, 2019 at 10:35pm

Thanks so much Frida! You're so right. It's been so long since I've felt myself. This medicine has been a miracle!

Permalink Reply by Meedo on October 16, 2019 at 12:56pm

Hi Ahmed . Amazing pictures . Good luck 

Permalink Reply by Ahmed on October 16, 2019 at 10:33pm

Thanks Meedo!!

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