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 Giusep on June 6, 2015 at 1:14am
Hey Chubs, Was your son completely bald prior to treatment?
Permalink Reply by Chubs on June 6, 2015 at 5:16am
Pretty much bald few left over hairs and loss of good amount of his eyebrows When he was 6 had totalis
Permalink Reply by Giusep on June 6, 2015 at 3:46pm
Wow your sons 2 and a half month results are astonishing. Any side effects?
Permalink Reply by Chubs on June 6, 2015 at 3:59pm
No side effects- he is 19 the pics from last month did not post here it is for comparison
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Permalink Reply by sadele on June 7, 2015 at 11:11pm

Hi Chubs,

How were you able to get the Xeljanz? Did you go through your insurance?

Permalink Reply by Seahawks Dad on June 8, 2015 at 11:22am

Chubs,

Thank you very much for keeping all of us updated. I plan to share the results of our experience with Dr. King as well. We are meeting him at his Middlebury clinic in a few weeks then expect to start on Xeljanz soon after. Your pictures are absolutely wonderful. Is there anyway you can get a picture of the front / sides of his head as well? The back looks fantastic...filling in nicely.

Best Regards

Permalink Reply by Chubs on June 11, 2015 at 8:42pm
Sure we got three months no charge through Drug mfg we will see but hopeful - here is a shot of the front first is now 2nd is last month
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Permalink Reply by Seahawks Dad on June 11, 2015 at 10:19pm
Thanks so much for the update.

Looking fantastic!

Any side effects?
Permalink Reply by Sara on June 6, 2015 at 9:36am
Hi ,my son is 7 years old with AU . Anybody knows that xaljanz, is usable for kids ?
I will be thankful if anyone can give me email of dr.king .
Thanks
Permalink Reply by AlopeciaDestroyedMyLife on June 6, 2015 at 12:04pm

Hi Sara,

Xeljanz should not be used on young children , Pfizer themselves recommend extreme caution. It's just not worth it at such a  young age they are still developing. 

Permalink Reply by Sara on June 6, 2015 at 12:23pm
Thank you for your reply , but maybe they can adjust the dose according to age and wight ,
If they found it without any serous side effects on adult .
This disease is affecting his self-esteem...
As a mother I'm really disappointed .
Permalink Reply by DJ88 on June 7, 2015 at 5:40pm

I just thought about this. What ever happened to that cream version of Xenjanz?

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