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 Alo-mom on March 7, 2017 at 6:42pm

Since you brought up "Cure" and since I volunteer with NAAF related to their Legislative Group I need to let this community know that there are planned cuts to the National Institute of Health (NIH). Again, not getting political, simply being informative, the increase in Military Funding will impact the amount of dollars that go for medical research. If you look at what is being proposed it is scary. We need to let our Senators and Congress people that there should be no cuts. I truly believe that the grants that the National Institute of Health ( NIH ) doles out will be reduced and you will see a slow down in the area of AA research, as well as all Autoimmune Conditions. Yes, it is great that we are all here to support each other because of AA, but we are going to be having these conversations for many more years if we do not step up our game in keeping our government working for us. Right now as things are playing out it is working against us. Last year as Obama was taking about funding increases for research, he noted Alopecia being one of them. If you do not believe me contact NAAF and they will back me up on this. Sorry to run off at the mouth on this, but we do need a cure and without us pushing it will never happen. 

Permalink Reply by cws on March 7, 2017 at 9:29pm
It's quite possible the cure does not come out of the US. China is closing the gap rapidly on medical advancements.
Permalink Reply by IcarusAlopecia on March 7, 2017 at 11:27pm

I hear you, Alo-mom.

It's hard not to get political when it comes to healthcare. Especially under our current "regime".

Permalink Reply by Christopher's_mom on March 7, 2017 at 7:09pm

May I ask what your dosage is and how long you've had alopecia?

I am sorry Xeljanz hasn't helped you.

Permalink Reply by Alo-mom on March 7, 2017 at 7:51pm
5 mo. Daughter has been on it. Full head regrowth. Dr. Is very pleased.
Permalink Reply by Christopher's_mom on March 7, 2017 at 10:11pm

So happy for you. I'm sure you and your daughter are pleased, too!

Permalink Reply by sadele on March 8, 2017 at 1:20am

Hi Alo-Mom

What severity of Alopecia did your daughter have? She's been on 10mg a day for 5 months?

Permalink Reply by Alop88 on March 8, 2017 at 1:40am

Hi, sorry that xeljanz hasn't helped you but to say the results from the studies aren't that good simply isn't true. Its been widely reported that its been successful in 75% or even 80% of people and my dermatologist said the same.

I've had AU since I was about 11 years old (15 years ago) nothing has worked for me I gave up trying, now I'm about to start xeljanz and I have hope for the first time in a long time that it'll grow back.

Permalink Reply by dreamscometrue on March 8, 2017 at 2:54am

I've had AU since I was 26-27 yrs old and now I'm 54.  I've recently been diagnosed with RA so I'm hoping Xeljanz will work for my RA and and AU.  Don't give up!  I know a cure is right around the corner

Permalink Reply by Alop88 on March 8, 2017 at 10:33pm

Thanks! I'm actually pretty hopeful now because of xeljanz hopefully it works for me and I agree a cure should be here soon.

Permalink Reply by Patchesforlife on March 8, 2017 at 10:20pm
I read alot and also think what you said is trur
Permalink Reply by LIU CHUNXIU on March 8, 2017 at 7:51am
i think xeljianz is jak 1 &jak3. aa needs jak1 1 & jak 2. that is why ruxolitinib is beeter than xeljianz. some people do not response for xeljianz maybe response to ruxolitinib

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