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 Frida Rupert on January 17, 2018 at 3:44pm

You look amazing Katrina!!!! What a great success!

Permalink Reply by James 2me on January 17, 2018 at 4:43pm

Was on Xelljanz two 5mgs a day not much success stopped takeing it went back on 16 weeks ago at three 5mg tablets a day. This is where I am today eyebrows in eyelashes comeing in  all facial hair back scalp hair started slow but is getting fuller each day. Patience is key to this journey I included two photos top of scalp 

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Permalink Reply by Anna on January 17, 2018 at 5:54pm

Amazing - congrats! I must say it seems that very few people see decent results with 2 x 5 mg a day - seems most need a higher dosage.

Permalink Reply by MavisKwok on January 17, 2018 at 9:18pm

Just asked the doctor, very disappointing, although he know that AU need 20mg,he said he cannot prescribe me dosage more than 10mg as the government not allow in Hong Kong.

Do you know where can I buy Xelijanz  in USA? I must have prescribion from doctor?

Permalink Reply by Newjack on January 17, 2018 at 10:00pm

Everyone is different, there are few people that did fine without 20mg and did fine with 10mg. I'd start with the 10mg do the 3-6 months and then progress to 15 or 20 if needed. 

I'm nervous as well being on the 11mg XR and I'm bald from the scalp and losing hair on my beard at the moment, but I'd absolutely give the standard dose a shot first and work your way up after. 

Turkey you can buy xeljanz, USA you must have a prescription and it's very expensive without insurance. 

Permalink Reply by MavisKwok on January 17, 2018 at 10:19pm

Thank you for your reply.

Feeling so sad when doctor not allow me for more dosage. 

Getting hope and then rejected by doctor.

I hope 10mg will be fine.I have found a buyer from china who can help to buy from turkey. 4500RMB for 54 tablets. I will try to start on 10mg next month, As my RA medicine inject still in my body and need to wait for one month before start the Xeljanz.

Permalink Reply by Frida Rupert on January 17, 2018 at 10:55pm

Mavis, I'm so sorry your doctor won't prescribe you more. Maybe if you combine it with some other treatments it will help make your current dose more effective. For example taking allegra, using minoxidil, lumigan on eyelashes and eyebrows, and/or discuss using steroids as an adjunct therapy. It's really frustrating when we can't get access to the medication we need to recover. Hopefully you will be able to get some from Turkey to bump up your dose.

Permalink Reply by MavisKwok on January 18, 2018 at 12:28am

Yes. Still feeling so sad.

I hope that 10mg will work for me.Thank you for your advice.

Hong kong medical develop so slow. 

Permalink Reply by Frida Rupert on January 17, 2018 at 10:47pm

Wow - that looks fantastic! I'm at month 7 and your scalp definitely has more consistent cover then mine. Mine is all different lengths of fuzz. My lashes and brows are back 100% which goes to show we all respond at different rates and orders. So glad you gave it another go! Thanks for sharing!

Permalink Reply by alopeciaguy1990 on September 19, 2019 at 5:38pm

How long until you saw intitial regrowth?

Permalink Reply by alopeciaguy1990 on September 19, 2019 at 5:36pm

How long did it take to see initial regrowth?

Permalink Reply by Frida Rupert on January 18, 2018 at 4:13am

Ok- I hate pics at the best of times and really loathe them now at my worst of times but I get so super encouraged from seeing progress in others. This is me at almost 7 months with 5 months on 20/25mg regime. Steriod pulsing from mid December. I take Allegra 180 x 2 and use 5% minoxidil once a day and some corny Asian growth serum (which probably does nothing but I feel like I should try it all. I recently (like > 1 month started LND too). Much of this growth happened in the last month or so. My lashes and brows are 100% back though the hair is still lighter then it usually is. Hoping my hair thickens and darkens and I have more to show soon!

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