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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Replies to This Discussion

Permalink Reply by Joserid on March 18, 2021 at 6:23pm

Help please!

Permalink Reply by Nat on March 18, 2021 at 6:29pm

Hi Jiserid,

In my opinion ( and I am not a doctor) you can start Tofa if you are otherwise healthy.

I think, you can start now and don't wait for COVID to end. You can buy generic Tofacitinib pills from Beacon in Bangladesh. 

Permalink Reply by Joserid on March 20, 2021 at 1:28pm

Thanks Nat. Did you hear about the tofa cream for eyebrows?

Permalink Reply by Nat on March 20, 2021 at 2:01pm

Hi,

I have heard but never used the cream.

My eyebrows and eyelashes came back on Tofa pills. 

Permalink Reply by Joserid on March 20, 2021 at 4:59pm

Did you recover all your hair? What is your treatment and dosis? And to buy in Beacon, how do you do it? By email?

Permalink Reply by Kate on March 18, 2021 at 12:48am

Hi everyone

I have had great success with Xeljanz generic, but my WBC count has been constantly getting lower and lower since starting the treatment. Now it's slightly below 3 and my derm wants me to stop the treatment immediately and even see a hematologist! I'm kinda stressed about this having read all these awful things about low wbc etc.. Also, the prospect of losing all the hair again feels just unbearable. Has anyone had low WBC during the treatment - what do your doctors say?

Permalink Reply by Nat on March 18, 2021 at 6:05am

Hi Kate,

I am taking Tofa and my WBC is Ok. My daughter's WBC was very low and we couldn't figure out why. After a while, we realized that it was due to Melatonin. Do you take any other meds or supplements? Maybe it's not Tofacitinib's fault. 

Permalink Reply by Kate on March 18, 2021 at 6:14am

Hi Nat!

I take a few other supplements, vitD, fish oil and vitamin consistently, sometimes add a few others but nothing that should impact the wbc.. will google them now 

Permalink Reply by Nat on March 18, 2021 at 6:45am

Good luck!

Permalink Reply by Linda on May 21, 2021 at 4:03pm

Kate,

That is heartbreaking, I imagine many of us may end up with low WBC from this drug but I hope not. I too would stop the Xeljanz if it were me, hair loss sucks, but it's not cancer!

anyone else on the blog have this happen? 

Permalink Reply by Kathy on March 22, 2021 at 11:12am

Hi

I am AA for 15+ years now with hair loss often around 40-50%. I have tracked blood work and health for at least 10 years now. I had a perm that specialized in AU & AA that I saw for years. Mostly supplements like high grade fish oil and NO dairy whatsoever, mens Rogain, ferritin and iron cts. I def got better but never enough to make me comfortable without a hat or hair piece. What I noticed after years of charting is every time I had a flu or any vaccine I lost huge amounts of hair. Last shot I took was 2 years ago when my grandson was born and I decided to stop taking any vaccines. 2 years later I am about 90% growth. Now I'm faced with the Covid shot. Has anyone else noticed this reaction? I realize it can be dangerous to skip vaccines but just wondered if its a huge coincidence. I tell every DR that asks me to take a shot (so many freakin' vaccines out there) and I have to say they don't laugh it off. 

Permalink Reply by Patchylatchy on March 24, 2021 at 11:36pm

I totally agree. It is quite concerning given that we have an overactive immunesystem.

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