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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
Replies to This Discussion
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Permalink Reply by LIU CHUNXIU on
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does anyone have the telephone number or e-mail address of the pharmacy in istanbul, Turkey and i would like to go to Turkey to buy Xeljanz and i want to contact with the people in pharmacy first. thanks
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I usually go to the pharmacy Istanbul sultanahmet district, the name is AYASOFYA the phone number is +90 0212 5137215, I never phoned, I go in the morning to order xeljanz and the afternoon I go to pick it up. They speak English, and I've never had any problems
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Hi , What price do this pharmacy charge in dollars ? I will be looking for 11mg x 4 bottles next month
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I hope you do not mind me asking but what is the cost in Lira or Euro per bottle ?
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Hi everyone,
I was just wondering if you can drink alcohol while taking Xeljanz
Also, thanks to everyone who told me about the hardship program.
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Hi Knightsfan,
You can but be careful. Xeljanz is hard on your liver.
I will say this (and NOT promoting it)
I went to London last week to visit friends. THe Brits DRINK. I had about 3 glasses champagne and about 3 cocktails. I woke up feeling fine but will def not make that a regular thing. After days after, went to Scotland to visit friends (The Scots I know drink a TON), and had a fair amount of beer. Same thing, I was OK.
As part of my Xeljanz treatment though, I will make those type of nights few and far between.
Good Luck!
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hi are you in Turkey,could you ask the price for JAKAVI in Turkey? Is it available in any pharmacy?
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**2 Month Update**
It's been almost 2 months since I started Xeljanz for my AA.
Here are my results:
1. Still sheddding
2. Growth in my eyelashes, scalp, and chest hair (hahaha)
3. No side effects
Pictures!!
The big spot on the back of my head is slowly growing. I'm really excited and hope that in 1 more month I'll have full regrowth.
It's silly, but, when it does grow back, I can't wait to have a really short haircut. I've kind of had to have a little 'fro to hide the spot for the last 2-3 months.
I'm most excited about my eyelashes. Since I was a kid I've always had, for a guy, very long lashes. When I lost the top portion of my right eyelashes and eyebrows, I really lost symmetry of my face. In photos, something always looked "off". I started to grow blonde hairs but they never turned black. About 3 weeks ago, I noticed black hairs. Then a week passed and some more. And then more!!
I wouldn't say eyelashes on my right eye are 100% back but I'd say they are 75% and I'll take it!
Sadly, my co-pay card ends on this next refill (I'm actually paying out of pocket about 1000 dollars). I'm asking my doctor today to fight insurance. I know I won't be able to continue Xeljanz without insurance.
The photos are:
1. Spot on back
2. Better eyelash for comparison purposes
3. Eyelashes and eyebrows that are growing back
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back-1.jpg, 1.3 MB -
better eyelash.jpg, 736 KB
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growing back.jpg, 732 KB
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Permalink Reply by Alo-mom on
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Very impressive. You need to call Xelsource asap and see if they can help you get the drug at no charge. This is not the prepay card operation, it has to do with the drug company looking at your income to cost of pills and providing them to you for a reduced or no cost. If you need further help friend me and I will give you all the phone numbers etc. These folks at Xelsource are so nice. I plan on writing the president of Pfizer and telling them what a great staff of folks they have working for them. This does require a doctor to sponsor you being involved and a bit of paperwork but nothing to bad.
It is not about the insurance because this drug is not approved by the FDA for Alopecia only RA. I am sorry to say you will not win this one, but if you do please let me know.
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