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 Starshine on August 6, 2015 at 8:53pm
Hi AU1989. That is great news, very happy for you. Do you know if the card renews at the beginning of next year like the other copay card.
Permalink Reply by AU1989 on August 6, 2015 at 9:29pm
I don't know if it renews for 2016. I visit Dr king in September and will many questions. Im certain he informed them it was for AA. Just FYI I completed the xelsource portion for patients asking dr kings office to fill out their portion. Also sent my 1040 tax form. Dr kings office sent them to Pfizer directly and I never saw the completed forms. Pfizer called today stating I was approved and to expect a call from their pharmacy.
Permalink Reply by kimberj on August 6, 2015 at 10:33pm

Hello Starshine. I am also using Xelsource. They are still fighting my insurance company but a rep for the company stated that if we don't get insurance approval, I would be eligible for the hardship if my household income was below a certain amount. If approved, my eligibility would run through the end of December 2015. Then I would have to reapply for the program again in 2016.

Permalink Reply by Starshine on August 7, 2015 at 7:41am
Thanks Kimberj. Do you know what the household income cut-off is. Are you still taking two pills a day? Given your success, I also started taking plaquenil.
Permalink Reply by Football fan on August 7, 2015 at 12:37pm
When I called they told me 90,000.
Permalink Reply by AU1989 on August 9, 2015 at 11:32am
I agree with the $90k number. I was approved and I make about $85k.I was approved through December 2015. Dont know what happens after that but I play to apply again in January 2016
Permalink Reply by kimberj on August 7, 2015 at 11:24pm

As Football fan said, I was told $90,000 for total household income. I am still taking 2 Xeljanz pills a day. I am only taking 1- 200mg Plaquenil pill a day now. My Dr. wanted to see if she could start reducing my meds a little without my symptoms coming back. We started this in June and all has been good. I will say that I noticed some slight shedding the first week or two but everything has recovered nicely.

Permalink Reply by Sabri on August 7, 2015 at 12:50pm
The price in Turkey for 56 tablets is 1707 Turkish lira with is about £380
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Permalink Reply by Sabri on August 7, 2015 at 12:51pm
Click on image for picture of info its in Turkish.
Permalink Reply by Sabri on August 7, 2015 at 1:35pm
They are not fake as they sell them over the counter in the pharmacy. They have set price 1707 Turkish lira. In poorer country's they sell it cheaper
Permalink Reply by 3ebdie on August 7, 2015 at 2:46pm
The boxes of the pills look different however. Could you maybe post a picture of the box and the pills self so we can have a look?
Permalink Reply by Sabri on August 7, 2015 at 2:51pm
I'm Turkish so I can read it.
Turkish price list sold over the counter. If they don't have. They will order for next day. 1707 Turkish lire about £380.
You should be able to buy it in Istanbul which is a city.
They always have cheap flights and hotel deals off peak.
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