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 Sam on June 30, 2016 at 5:04pm

Try Costco pharmacy, if you live near one.  In addition, if you are a Costco member, you can sign up for Costco Member Prescription Program.  And ask them to use the Costco Member Prescription Program as the Primary Source, and Xelsource Co-pay card as the Secondary Source.  It will maximize Co-pay card purchases, as it is limited to $12,000 Max.  Furthermore, Costco doesn't appear to have Specialty Pharmacy, such that, they will have your Xeljanz ready for pickup in one day.  I am a Costco member, and I told them I was denied by my insurance.  Costco pharmacist  suggested I sign up for the Costco pharmacy program, and she took upon herself to use it as a Primary source to save the maximum $ on co-pay card.  Before Costco, I tried CVS but their bureacracy of CVS Specialty Pharmacy was like talking to a wall. 

Permalink Reply by Talia on July 1, 2016 at 6:38pm

Sam, 

Thank you for recommending Costco! I am a member there, so I will think about using them on my next refill. I was able to get my Rx through a small compounding pharmacy here. I agree with you about CVS Specialty Pharmacy. They have been the absolute worse to deal with....

Permalink Reply by Barbara on June 30, 2016 at 3:08am

Hi! I am new, I am from Italy (sorry for may bad English). My daughter (she is 17 years old ) has AA. In Italy we can not use nor tofacitinib nor ruxoliltinib, in USA you are lucky because you can buy the drugs. I have a question: has anyone traied ruxolitinib cream? It seems more effective than tofacitinib one. My doctor said to me to go to Switzerland and buy Jakavi   and then a a pharmacy could prepare a cream

Permalink Reply by lu391 on June 30, 2016 at 5:10pm

se vuoi puoi comprare xeljanz tofacinib senza ricetta in turchia, ad istanbul il prezzo è di 550 euro circa a scatola dipende dal cambio

Permalink Reply by Starshine on June 30, 2016 at 8:00am
Talia, I know lots of people who are using the copay card without insurance and with no questions asked what it is for. They are really giving you a hard time. You should have your doctor call them or Pfeizer Could probably help.
Permalink Reply by Talia on July 1, 2016 at 6:39pm

Starshine,

I ended up calling a small pharmacy here in town and they helped me out with no problem. I got my Rx filled the same day while CVS gave me the "run around" for 3 weeks just to deny me.

Permalink Reply by Starshine on June 30, 2016 at 8:00am
Talia, I know lots of people who are using the copay card without insurance and with no questions asked what it is for. They are really giving you a hard time. You should have your doctor call them or Pfeizer Could probably help.
Permalink Reply by 3ebdie on June 30, 2016 at 10:05am

Dr.King is recruiting patients now for the sponsored Incyte trial using a Ruxolitinib cream 1,5%. You can download all the study details here: 

http://www.filedropper.com/approved6816kingbrettincytetrialconsentv...

Permalink Reply by sadele on July 1, 2016 at 11:24am
This months progress:
Hair is getting a bit longer. It's very thin in some areas and I still have many little round spots that don't have hair, (these contribute to the thinner look).
Eyelashes started growing and filling in, but the last couple weeks they began breaking off. I'm hoping a new batch will grow in. Eyebrows are still not growing.. I have a few hairs on the left one.
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Permalink Reply by Toxicmosquitoaf on August 8, 2016 at 4:42am

Bruh .............. after seeing this picture ..... I want to have hair so badly!!!! I want Xeljanz finally in EUROPE!!!!!!!!! (thourght insurance ofc, im a only a student) :(

Permalink Reply by sadele on July 1, 2016 at 11:26am
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Permalink Reply by sadele on July 1, 2016 at 11:27am
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