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 AU1989 on June 18, 2015 at 9:54pm
6 50mg tablets once a month. He gave me three months worth for now.
Permalink Reply by Football fan on June 18, 2015 at 12:08pm
Hi AU1989 I'm on xeljanz and I take Prilosec.Do you take them at the same time or space it out?
Permalink Reply by AU1989 on June 18, 2015 at 9:55pm
Havent started them yet ( next week) but doctor didn't mention any concerns about taking them together
Permalink Reply by Julie on June 17, 2015 at 2:06pm

Hey Football fan. I've been on xeljanz for 15 weeks and kind of am in the same boat as you. I have gotten my eyebrows and some arm/leg hair back but am slower to respond than other people it seems like. I'm going to try to give it 6-9 months and then see if i want to keep going because at some point hte cost is going to be too much. I'm in the process of appealing the insurance company but in the meantime tried the online coupons that i googled. I just typed in xeljanz coupons and found a few sites that had coupons (good rx.com and some others for example) I printed off the coupons from about four sites and took them each into walgreens. The pharmacist scanned each one to see which one was the largest discount and it ended up saving me 1800.00 on my first refill. I was totally shocked it worked but the pharmacist said it should be good for my next refill as well. hope this helps!! good luck!!!!

Permalink Reply by Football fan on June 17, 2015 at 2:17pm
Thanks Julie good luck.Keep us posted on your progress.Going to try that for my next refill.
Permalink Reply by AlopeciaDestroyedMyLife on June 19, 2015 at 7:16am

Here is this months photo. Keep your eyes peeled for next month as I will have a little treat for you all :) The sides are taking much longer than everywhere else but I am getting a few hairs and given time I know it will fill in eventually. 

I have been taking Xeljanz now for almost an entire year. 

Permalink Reply by Ava on June 19, 2015 at 7:31am

That is incredible. I am so happy for you and it gives us all hope. I am in Ireland but I have my doctor seeing can something similar to Xeljanx be found here. Thank you for posting your pictures, it really can lift your spirits when your feeling a bit down.

Continued luck to all on the programme.

Yvonne.

Permalink Reply by AlopeciaDestroyedMyLife on June 19, 2015 at 8:00am

happy to give out any support I can . 

Permalink Reply by joe on June 19, 2015 at 10:57am
What side affects you had during the time you being taking xeljanz??
Permalink Reply by kevin on June 19, 2015 at 3:23pm

bonjour  splendides  douze  mois  combien de temps  peuvent  vous encore  être  sur  xeljanz ?  Dr .  roi  dire  vous  quand  tout aura poussé  si  vous  alliez  à maintenir  la drogue ?

Permalink Reply by Kasten on June 19, 2015 at 10:39am

Wow, incredible progress ADML!  Can you provide a quick recap of how long you have been on Xeljanz at various dosing, as well as anything else you have been taking to supplement the growth?  Thanks!

Permalink Reply by AlopeciaDestroyedMyLife on June 19, 2015 at 2:40pm

thank you :) 

Almost 12 months now. I'm taking 3 pills a day 15mg and using minxodil as well as hair growth factor.

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