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 Football fan on October 8, 2023 at 1:39pm

Hi everyone xeljanz did not work for me and I tried every dose for years.My doctor left for another state during Covid so I had to find a new one.It took me a year to get in with a new doctor and she was great put me on olumiant no problem with insurance covering and the minoxidil pill which my pharmacy still hasn’t been able to fill yet.Fingers crossed 

Permalink Reply by Joserid on November 22, 2023 at 4:09pm

Hello from Spain,

I am 44 yrs old and AU from 2016. I have started to take Olumiant 4 mg/day exactly 1 month ago.

In the 3rd week I observed a around 5 hair isolated and 1 week later, I have too many in Head, beard, eyebrowns.

They still are extremely short and white, so not easily visible. But I think it is a good signal.

I feel very well, no side effects. Even my lactose intolerance seems lower.

Yesterday, I received 4 vacinnes at the same time (covid, hepatitis B and zoster), without stopping the medication (anybody told me the opposite). And being honest, it was a hard day but because of the vacine side effects. Today, I feel a bit better and I hope tomorrow totally recovered.

No photos because the hair is not still visible.

I wish the best to all of you who has started this journey and also to the people who don't have access to the medicine.

Good luck. 

Permalink Reply by Football fan on December 17, 2023 at 2:32am

Hi Joserid any more regrowth on the Olumiant?I can’t tell if it’s working for me I do have about 30 percent hair on my head so can’t see any short white hair yet.Its been  exactly 3 months for me.Think my eyebrows are more filled in.My eyelashes have always been good I use  latisse I think that really helped.Keep me posted on your progress.

Permalink Reply by Joserid on December 18, 2023 at 6:20am

Hi,

Bad news for me. I was just 6 weeks taking the medicine, with an important regrowth, still White hair but I would say around 40-60%. The doctor told me that I was an "early responder".

However, I started to have the symptoms of probably an esopaghitis (stagnant food in the esophagus and chest and back pain).

3 doctors told me that it was not related with the medicine, but the fact is that I improved leaving the medicine.

Then, I am doing some clinical tests to see what happen and if I can retake the medicine.

Anybody with similar circumstances?

Permalink Reply by Djp on December 17, 2023 at 7:53am

Why can’t your pharmacy fill the minoxidil. Adding minoxidil was a game changer for me regimen. 

Permalink Reply by Football fan on December 18, 2023 at 12:54am

They did finally fill the minoxidil but it took a few weeks it was out of stock.Going to Mexico in February going to try and pick up a couple bottles so that won’t keep happening.Djp are you on Olumiant too.

Permalink Reply by Football fan on January 6, 2024 at 2:58am

Happy new year I was wondering what happened to this discussion group.In the last year or so it has dwindled down to less than one reply a month.It was so active in the past not a day went by without multiple comments.Did everyone grow back their hair and leave this site?

Permalink Reply by Nat on January 6, 2024 at 9:00am

Hi, I think some people moved to Facebook. They have an Alopecia group. 

Permalink Reply by Kris on January 7, 2024 at 1:09pm

Anyone ordering Olumiant from Medisellers, Indiamart? Has anyone had it tested to determine if it is the same medical ingredients as what would be given in North America? Can’t afford it in Canada even if I could find a prescriber. Thanks for your help

Permalink Reply by Jcortez05 on January 9, 2024 at 7:25pm

Hey guys I was on xeljanz and am now on litfulo , very similar - there is an alopecia survey just to get more info you don’t have to participate. If you qualify for the survey you can get $60 . If you are interested here is the link . Of course you’re not obligated to . I just did it bc I feel like this community needs more info and more answers . https://forms.gle/791yS1dL4gxcCwsA9

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