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 Kathy on February 14, 2018 at 8:02am

I’m new to this site but not alapecia. My derm said it’s about keeping the immune  system calm. First thing she did was remove dairy (milk not eggs) from my diet entirely. Made a huge difference. She added 4 Nordic Naturals proomega per da6, Claritin, iron pill every 2 weeks. 

Over 15 years I’ve noticed my triggers are ferritin levels & inoculations, (even novocaine)  

I had the shingles shot 5 months ago and it really set me back but getting better now. 

Never heard of these drugs you mentioned, any docs you can recommend in Chicago area that specialize it these drugs?

Permalink Reply by Carlie on February 14, 2018 at 12:10pm

Yes, I'm on Levothyroxine and something for T3. But I haven't started xeljanz yet because I'm still waiting for my bloodwork to be completed.

Permalink Reply by Frida Rupert on February 14, 2018 at 7:42pm

Thanks Carlie. I'm sure it will be fine. Seeing as thyroid issues and alopecia seem to be a common combo (lucky us- not) and I'm sure t3/t4 meds have been combined with immune suppressants before I think it will be fine. So many meds have hair shed as a side effect and for the most part it doesn't happen but as an alopecian seeing the side effect listed always makes me nervous...I mean 18 months ago I wouldn't have believed my hair would all fall out but here we are... (at least now I've got hair again albeit short)...

Permalink Reply by Patchesforlife on February 14, 2018 at 10:03am

anyone using low dose Naltrexone?? can. you please let us know how it had been for you

Permalink Reply by Newjack on February 14, 2018 at 10:27am

There is a Facebook group specifically for Alopecia and LDN. 

Permalink Reply by Carlie on February 14, 2018 at 12:06pm

I've been on LDN for about 5 months. At first I thought it was working but then my hair fell out again. I'm still taking it because it's inexpensive and harmless. I'm AU.

Permalink Reply by kevin on February 14, 2018 at 5:06pm

good evening i brought back 3 xeljanz box today from turkey i am from france, i took my first stamp. do you have any recommendations to make to me? 10 months ago I followed interleukin 2 at a low dose today I have a hundred hair that have sprouted and new hair growing and an improvement of my nails, I think the treatment has work my immune system. but I do not have a good regrowth that's why I wanted to give a boost by taking xeljanz 2 tablets a day. dosage 10mg day.
I will take appointment with my doctor for a follow-up of the blood and that he make me a letter so that I do not have any problem with the customs at the return of France. I pay 1280 euro about 1150 dollars for 3 boxes

Permalink Reply by Newjack on February 14, 2018 at 6:24pm

Where in Turkey did you get it ? I'll be in Greece over the summer. 

Permalink Reply by Frida Rupert on February 14, 2018 at 7:38pm

That's great Kevin. Glad you go back home with meds safe and sound.

Permalink Reply by Return_life on February 15, 2018 at 8:24am

Merci du suivi

3 pillules de 5 mg... et meme dans bcp de cas pour une bonne repousse certain on besoin de plus...

Permalink Reply by JG on May 15, 2018 at 9:16am

Hi Kevin, I am going tomorrow to Istanbul, I called three pharmacy and the best price I have got 545 USD per box. Where did you buy yours?

Permalink Reply by Carlie on May 15, 2018 at 10:39am

Hi JG, That's a fabulous price. Xeljanz is $4000 here in the Us. I plan on going in June. Please let us know how it goes. How many months worth can a person buy at once. Do they have to order it and do you need to take cash or a credit card? Do they pharmacists speak english? I hate to travel with a lot of cash but I've heard cashiers checks are not always accepted. Your thoughts, please. Thank you!

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