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 kevin on January 1, 2020 at 5:43pm

hi mashloom i'm terribly sorry
anass lost his hair during xeljanz? seeing that he is at a low dose you should have increased the dose when you saw that his recruiting. I hope it will grow back inshallah don't worry annass is very young future treatments will come

Permalink Reply by kevin on January 1, 2020 at 5:45pm

I advise you to add a dose of cortisone if you have a dermatologist with xeljanz and cortisone anass will recover his hair in 5 months

Permalink Reply by Frida Rupert on January 1, 2020 at 6:23pm

Kevin! Are you doing ok? I’ve been wondering how you are going! HappyNew Year!

Permalink Reply by Meedo on January 1, 2020 at 6:25pm

Hi Kevin . Happy new year ! How’s your progress ? Did you add cortisone to your xelijanz or you still use xelijanz and baracitinib ?

Permalink Reply by Frida Rupert on January 1, 2020 at 6:27pm

oh mashloum - how hard. I think adding some steriod pulse will help sped it up but that’s a difficult decision to make for a child who’s hormones are still adjusting. I do think once he gets older and past puberty the ability to have more stable results will come- I think children who get alopecia prior to puberty are difficult to dose and maintain stability of regrowth because of the constant changes going on in their bodies. Times that seem to coincide with the onset of severe alopecia link to times of hormonal upheaval - puberty, child birth, pregnancy, menopause..,. I think in kids the pre puberty period is difficult to foresee how to approach dosing. Going up in dose I think will get him back regrowing but it will be something that will probably come and go until he totally stabilises in his growth. He is a wonderful and brave boy!

Permalink Reply by Mashloum on January 2, 2020 at 3:46am

Thank you Frida

Thank you Kevin

I do agree that he is still in growing stage, but I preferred adding half tablet instead of cortisone as precaution

i will keep you updated

keep up good news always

Permalink Reply by Frida Rupert on January 2, 2020 at 3:15pm

I agree Mashloum. While steriods are very effective, given Anas age it is safer to up the Tofacitinib dose. Steriods can impact negatively on the production of hormones needed to go through puberty, so for kids I think they need to be used only as a last resort or for a short time. If you are seeing regrowth I think it’s a matter of patience - see where he is after dose increase in 3 months. He’s a great kid and he has great parents! I think puberty is going to be a difficult time to manage but hopefully in a few years he will be more stable and get more consistent results. The main thing is that you have induced regrowth and are keeping his follicles from miniaturising which will enable him to have better regrowth in the future.

Permalink Reply by kevin on January 12, 2020 at 2:42pm

hello all user of xeljanz for 2 years I noticed that I have muscular weaknesses and knee pain I have to do an irm I no longer have strength in the right arm and it is paralyzed at the slightest effort it makes 1 months and I have synovial effusion in my left knee

Permalink Reply by Mashloum on January 27, 2020 at 1:36pm

Hello for everyone

just as an update for my son progress after two months from increasing dose to two tablets in addition to new Xeljanz cream parallel 

still response is below expectations and I hope it will trigger very soon

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Permalink Reply by Mashloum on January 27, 2020 at 1:38pm

Permalink Reply by Mashloum on January 27, 2020 at 1:38pm

Permalink Reply by Mashloum on January 27, 2020 at 1:40pm

During the period from July up to beginning of December 2019 we were using 1.5 tablets of 5 mg and progress started but then falling down the white hear progressed 

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