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 Frida Rupert on July 12, 2019 at 2:35am

Hi Kevin, for some reason I can’t open the link- could you repost the link? I am  interested in reading the article. I have  thought that something that focuses on Jak 2 would be more effective, given slightly higher regrowth rates using jakavi, and baricitinib seems to offer much of the benefits without the huge price tag. The only concerns I have are that baricitinib hasn’t  got as many studies  available to determine safety and side effects and, for women more specifically, baricitinib has shown to be contraindicated in pregnancy (in mouse studies) whereas limited info suggest Tofacitinib not to have an impact (from studies done on accidental pregnancies while under treatment).  Hopefully more info will come out soon as current findings on studies in various test phases begin to become public.

Permalink Reply by kevin on July 12, 2019 at 10:26am
Permalink Reply by kevin on July 12, 2019 at 10:28am

hi frida here is the link in pdf to download, can you tell me if he wants to try an inhibitor jak 1,2,3?
the rest I understood correctly.
thank you.
the article is really interesting

Permalink Reply by Frida Rupert on July 14, 2019 at 7:46am

Hi Kevin I seem to have issues using the link- can you give me the name of the article and I will search jaad for it online and then get back to you with what it says and my thoughts on it.

Permalink Reply by Ahmed on July 11, 2019 at 4:49pm

We all can get xeljanz for much less than half price, so we won't be needing to order from you.

Permalink Reply by AlexRodriguez13 on July 11, 2019 at 5:42pm

We all know the US (FDA) don't acept that scam (Beacon Pharma). I can get the original Xeljanz for half the price. Don't lie to people. Beacon Pharma drugs are not the same as Pfizer. 

Permalink Reply by hellopeesha on July 11, 2019 at 5:57pm

I'm confused - Ahmed didn't lie? He simply stated that nobody will need to order from you as people can get the drug for much less than half price. 

Also, you state in an earlier post that your name is Javier, yet in the post directly after that, you sign off as Daniel. You also literally mention the word "scam" in your scam. And yes, Beacon drugs have shown tremendous success for the honest people on here who've had the misfortune of living with alopecia, so you can also stop spreading confusion. 

This is a safe space where people come to offer advice, support, and love to cope with and conquer alopecia and all of the demons that come with it. Please take your scam elsewhere.

Permalink Reply by Devices561 on July 11, 2019 at 6:07pm

Well said my friend. It is sad to think that people would come to a forum like this trying to take advantage of others. I never wish bad things on anyone but I would think that acting in this way won’t lead to anything good. On a positive note.. I do more reading on this forum than writing and can’t thank everyone enough for the wealth of information and positivity you bring here. 

Cheers

TS

Permalink Reply by Frida Rupert on July 12, 2019 at 2:48am

Alex/Daniel, thanks for the offer but a lot of us have a full head of hair from Beacon meds, which have been lab tested (twice independent test results with the active ingredient being very close to the Pfizer branded med) and cost a tiny fraction of the cost of xeljanz. They are not a scam or even produced illegally as Bangladesh has exemptions under the WHO to produce medications regardless of patent due to the developing nation status. Bangladesh has a reasonably high level of education comparative to the economic status it holds, particularly in the sciences and have been very effective in producing a range of pharmacuetical products for domestic and export purposes. Their proximity to India, a huge producer of generics, has also influenced government policy with the Bangladesh government focusing on developing Bangladesh as a generic medication producer to compete with other global producers by enforcing pharmaceutical standards and using domestic economic levers such as tax breaks and research funding to grow the market.

The only issue with beacon (or any meds that need to be imported) is issues with customs but, seeing as you are sending from Mexico then the products you send would face a similar risk of confiscation. 

Permalink Reply by Nat on July 11, 2019 at 6:14pm

Hi Ladybug,

My first order from Beacon took about 3weeks, the second one arrived in 1 week. I am in NJ. Also, second time I ordered one year supply in 11mg. The box was tiny and customs did not stop it.

Permalink Reply by Devices561 on July 11, 2019 at 6:41pm

That’s great. I am getting ready to place an order with them as well. I have been using the branded drug for last 6 months and it’s getting too expensive for me as I live in the US. I noticed that they now have the once a day 11mg which is the dose I am currently taking with the branded drug. I know several people have had the drug tested but my paranoia makes me want to get it tested before taking it as well. 

Permalink Reply by Cassidymain on July 11, 2019 at 9:23pm

Hi everyone! I have followed this thread for almost a year now and i love reading all the success stories. I am not on xeljanz but i am in a trial for a different Jak inhibitor made specifically for alopecia. It’s working really well! I am four and a half months in and i have a lot of terminal hair growth all over. My question for those who have gotten full regrowth is, once the growth got going how long did it take to get full coverage? I have a lot of growth that i’m very happy with but not quite at the stage to put my wig away. It’s somewhat patchy which i know is normal. But from others experience, how long did it take to get full regrowth once it really started coming in? Thank you to anyone who responds! 

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