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 Danielle36 on April 3, 2020 at 11:59pm

YESSS!!!  The Stem Cell Educator finally got FDA approval and just needs funding to start the clinical trial in the USA. Check it out: http://www.tianhecell.com/

Permalink Reply by Khalil on July 3, 2017 at 2:50pm
Hello everyone

Nice to meet you all

I would like to know from where I can get
Xeljanz in cheap price

I heard it's cheap from turkey

Is ther any one buy Xeljanz from turkey

Please advise

Thanks in advance
Permalink Reply by IcarusAlopecia on July 5, 2017 at 11:44am

7 month update!

So, I started Xeljanz in January 2017 and sadly ran out of the free pills in April. I posted photos before but here is my current situation.

No shedding at the moment. Or rather, very little, like 1-2 hairs as opposed to dozens on my pillow when I wake up or in the shower. I'm very happy!

Regrowth. Eyebrows are fully back and my weak eyelash is fuller and full enough to look normal. I'm really thrilled about this

My scalp has come in about 95%! I actually had my barber give me a really, really short summer cut! I haven't been able to do that in years. It's weird, I only wanted to grow back my patches so I wouldn't could cut my hair short!?
Photo attached.

Weight gain? None. I actually started a low carb diet to lose the extra 5lbs I've been carrying around. I'm considered slim, so the weight was never going to be an issue for me.

All in all I feel great. I'm loving my new hair.

What now?

Well, I did appeal my Xeljanz and the decision letter is on it's way TODAY Fedex from the state. Sadly, I'm going away tonight and won't get it for a week. Something tells me it's denied. I will try to go on the hardship program but my salary is too high. I will still apply and mention I just bought a home and that's really impossible for me to pay for X AND my mortgage.

At the moment, I'm only using minoxidil and taking my propecia for MPB. No alopecia treatments at the moment. I may go in for cortisone shots for the tiny little spots in the back.

So far so good. Fingers crossed my appeal is actually in my favor.

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Permalink Reply by Suzie on July 5, 2017 at 11:51am

Awesome growth!  So happy for you!  Hoping you can continue your Xeljanz treatment!

Permalink Reply by IcarusAlopecia on July 5, 2017 at 6:23pm

Thank you, Suzie! 

Fingers crossed my appeal is overturned.

Permalink Reply by Frrankie on July 5, 2017 at 10:03pm
FYI my doctor just moved me to two pills twice a day. I will keep you all,informed. Currently little has changed for hair. Hair is growing in but not cosmetically pleasing. My facial hair is slowly getting thicker and gaining pigment. My nails still crack and it kinda sucks. I work with my hands so strong nails are helpfull. Keep the pictures coming! It is cool seeing people make progress. My results don't show with my camera. When it dose I will.
Permalink Reply by J_s_m on July 6, 2017 at 8:14am

Hello, everyone. Later in the day i tried to make a post about the availability of the drugs that we need like Ruxolitinib or Tofacitinib which are the JAK inhibitors used in Xeljanz and Jakavi being found at VERY AFFORDABLE prices manufactured in China. With some researching i was able to figure out that they are exactly the same thing. They have the same matching Chemical structure when compared with the one on the wiki page and even have the same CAS number. But for some reason my post even after so many hours never got approved. Which brings me to an interesting question, is this site in anyway run by the corporate companies? I hope not. You guys can search for Ruxolitinib or Tofacitinib on Aliexpress or Made-in-China .com and find them out yourself. Cant we buy them and use it according the prescription that we need? In Xeljanz, it contains 5mg, or 10mg and Maybe upto 20mg in a pill. And a bottle contains 60pills. For a Whole bottle of 10mg xeljanz all they are providing us is 0.6 grams. Which we can easily get from this sites for less than 50$ i guess. I am writing this whole thing in bold so that nobody misses it. I would love to hear your inputs on this. :)

Permalink Reply by IcarusAlopecia on July 6, 2017 at 8:28am

Hi,

Just my opinion but I would never, ever, buy any medicine from Alibaba/Aliexpress and certainly not from China. The quality control is simply not there and one is just opening themselves up to complications from possibly adulterated medicine.

I'm not sure if this site is endorsed or run by Pfizer or other pharma companies. I'm also not sure if some of the regular posters are representatives of those companies. I think the responsibility to sort out information posted on here lies with each individual. If something sounds too good to be true, it probably is. The best one can do is follow your doctor's advice and take everything you read on the internet with a grain of salt.

Good luck!

Permalink Reply by J_s_m on July 6, 2017 at 8:35am

I can agree with you being too good to be true, but then the Pharma companies that dish this products out are making them for exactly this prices that we see on the site. We are simply paying them 1000% or more markup simply because they can. The best thing we could do is somehow get some product and do some testing on the product. They even provide free samples as long as we pay for the Shipping. But then i am not a chemist in anyway. It would be great if someone could get hands on and do some testing on the product itself. Dont you think its better solution than completely writing it off simply becasuse they dont charge you 1500 a bottle ?

Edit : Ok the article i posted have magically appeared after 6 hours. Seems kinda fishy to me, that my article comes 6 hours late and someone else's article gets posted in the time between. The detective in me is hard at work. Lol

Permalink Reply by IcarusAlopecia on July 6, 2017 at 8:45am

I work in spice and food industry. There is something called a bait and switch. For example, you order from these chinese vendors and they will send you a sample to test. The sample comes out fine and you place an order for 100 pills. Those 100 pills are not only fake but harmful to ingest. Now, unless you are going to test every single pill, which is not possible for many reasons (cost), then you are taking a huge risk.

It is not worth it. 

You are also hoping someone can get their hands on the product and run testing?  So, if I understand, anyone here can order a sample, say they tested it, say it came out fine and then you'd order? You are far too trusting my friend. I'd be a bit more cautious. 

Yes the prices that pharma companies charge is unfair but there is no way around it. I wouldn't risk my health for bargain pills I bought online from China.

I know Alopecia sucks. We are all in the same boat. However, we shouldn't get reckless and put ourselves at risk. 

Permalink Reply by J_s_m on July 6, 2017 at 8:51am

Well i can see where you are going with this. I was only looking for more opinions on the matter. I guess i am going to have to wait another 2 or 3 years for the Pfizers patent on this to expire so that we all can buy it for a price that's less ridiculous. 

Permalink Reply by lu391 on July 6, 2017 at 10:07am

Thanks for the interest, I buy it in turkey at the price of 550 euro, it would be nice news to find xeljanz cheaper, did you try to buy it?

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