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 Xeljanzjourney on July 21, 2022 at 6:15am

Hi Frrankie I’m eager to hear your experience switching from Xeljanz to Olumiant. I’m considering doing the same and am wondering….will I lose my progress? Will I see even more improvement? Etc.

Permalink Reply by Frrankie on July 21, 2022 at 11:55am

Well funny you should ask. Just today I took this picture to upload on this forum. My goal was to document 1 week after changing to Olumiant. Then when my dose increases to 4mg take and post another picture. 

 I had/have the opinion my mustache is thinning. But it could be the camera flash. But it is too early to tell.

After taking today's picture maybe 10 minutes later I had a mustache hair in my mouth.

I sent a picture to my dermatologist with concerns on losing progress. She will respond when she is in the office.

I am sure it will depend on blood work.

I have to note I do get injections monthly.  I believe they help but only a little.

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Permalink Reply by Xeljanzjourney on July 22, 2022 at 11:04am

I assume it would take weeks or months for you to have your preliminary results, but I am not a doctor. 


Right?

Permalink Reply by Frrankie on July 30, 2022 at 7:07pm

Here is my updated.  My doctor has increased my prescription from 2mg to 4 mg. I am just waiting for my current prescription to run out.

Visually it appears to still be holding after the prescription change. It should be noted the change is only a couple weeks old.

Here is a current picture for those looking for information/context.

I plan to incorporate a Dirmenator 2 microneedling system to stimulate growth. 

For those interested look up the name Dirmonator 2.

I have had significant results in the past with DPCP.

I am thinking an electric microneedler will stimulate results.

With this said, let's see!

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Permalink Reply by Starshine on July 19, 2022 at 9:17am

I was wondering the same thing.  And does it work as well as Xeljanz.  

Permalink Reply by sadele on July 19, 2022 at 9:49am

I got the prescription from my Derm for it but am currently battling insurance to cover it. They need a pre-authorization so it’s just a juggle game between my Dr and my insurance. She’s starting me on 2mg for a couple weeks then bumping me up to 4mg.

I’m currently on Xeljanz 20mg a day, oral minoxidil, Dutasteride and Spirolactone… my hair is all coming back and my brows and eyelashes are finally growing after being gone for 9 years.

Permalink Reply by Starshine on July 19, 2022 at 10:40am

If you start on it, let us know if you think it is as effective.  I have also had great results with Xeljanz and am afraid to switch.  It sounds  like insurance companies are going to still try to fight it.

Permalink Reply by SabineTawni on July 20, 2022 at 10:05am

It's been my experience that insurance companies try to fight coverage for any new drug.  Frankly, I don't see how they can cover drugs for other autoimmune diseases and then exclude coverage for ours.  Once something is FDA-approved, they should be required to cover it, if that is the only drug available.  Unfortunately, they do not seem to realize that hair is FUNCTIONAL; it is a protectorate.  But they will still grab at any excuse they can to make a profit.

Permalink Reply by kevin on July 19, 2022 at 9:13pm

hello I started baracitinib on June 7 4mg per day, my dermatologist prescribed it to me for severe eczema because he does not reimburse it for alopecia it was the only solution.

since 2018 i was on tofacinix 11mg daily

my eyebrows seem fuller the hair Nothing better..r.

Permalink Reply by kevin on July 19, 2022 at 9:14pm

with 2mg you will have a loss there are very few results with clinical trials

Permalink Reply by Frrankie on July 20, 2022 at 7:29am

I have not suffered any real hair lose changing from 10mg  xeljanz to 2mg olumiant. 

I have only been on Olumiant for a week. If I start to lose I will update.

Permalink Reply by Nat on July 20, 2022 at 8:39am

Hi Frankie,

Did you just stop Xeljanz and start Olumiant? No overlap?

Is your insurance paying for Olumiant?

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