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 ujjain on January 20, 2016 at 6:35am

>> "Now how much cost a box of xeljanz in  turkey? three months ago I had spent about 580 Euros"

That is 580 euro for a box with 60 pills? e.g. 1 month supply?

I'm really struggling with AU and one eyebrow thinning, so I'm a bit depressed. I feel I can't keep doing triamcinolone injections anymore, as I spent 3 months waiting on an NHS appointment and he refused to do it. I considered doing them myself, but that seems too risky. One time I paid 300 pounds for minimal injections, which didn't work well either.

I'd like to consider Xeljanz instead of prednisolone, but I had a few questions.

What if all hair comes back? You will find your dose and live on it? I assume the chance is big of relapse if you stop.
How are the side effects?
What is the cost in Turkey and where?

If this won't work for me, I'll probably get eyebrows tattoo'd as I'm a bit tired of trying to get injections.

Permalink Reply by dr. who on January 20, 2016 at 1:49pm

the box contains 56 pills, and that's the price indeed, just go to sultanahmet district in istanbul, you'll find plenty of pharmacies there . Its a touristy place, so there's a lot of police there taking care that all businesses are legit. You just have to order the boxes, and they'll bring it in normally  7 hours. give xeljanz a try instead of spending so much money in those injections, that's what Id do if I were you.

and about the dose to live on, that's the big question here. but afaik every person who stopped completely, had a relapsed. I see this treatment as a bridge until something better or maybe a cure comes along.

Permalink Reply by ujjain on January 21, 2016 at 5:57am

Thanks a lot. I might get a ticket to Turkey then to buy a 4 month supply. Weekend days obviously are the best for me, but I think that might be a problem with Turkish pharmacies.

Permalink Reply by ujjain on January 22, 2016 at 4:56am

So are you suggesting if I arrive in Istanbul on a Friday morning and fly back on Sunday, I should be fine?

Can you recommend a cheap pharmacy?

Permalink Reply by dr. who on January 22, 2016 at 5:16am

yes, watch out for any holidays though, and that price it's the standard price in turkey ( ive asked around)

Permalink Reply by ujjain on January 22, 2016 at 8:30am

Do I need to bring a prescription by the way?

Permalink Reply by ujjain on January 22, 2016 at 8:47am

Because that seems a bit tricky from the UK.

I mostly appreciate your help by the way, thanks a lot!

Permalink Reply by Xeljanzmiracle on January 22, 2016 at 1:46pm
Ujjain, go to page 135 and look for the post by the post by lu391 on November 24. She gives the address of the pharmacy in Turkey she used. You DO NOT need a prescription. You can order it over the counter there.
Permalink Reply by ujjain on January 22, 2016 at 2:05pm

Thanks, I am very grateful.

Doe anybody know if you can pay by debit, credit card or if you have to pay in cash?

Permalink Reply by dr. who on January 22, 2016 at 4:54pm

ive paid by debit and i believe credit also works, you only need to go there, there are exchange offices everywhere , atms

Permalink Reply by Toxicmosquitoaf on January 21, 2016 at 5:27pm

I love this post guys. Gives me much hope. But I have a question, do anyone of you know how could I get Xeljanz in Slovenia (Europe).

Anyone on this forum from Slovenia who maybe knows how to answer my question?

Permalink Reply by Giusep on January 22, 2016 at 8:00am

Hey All,  I was wondering if anyone has heard any updates on the studys being conducted in Europe on the topical form of Xeljanz???

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