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 Return_life on January 6, 2017 at 11:27am
I had a more results than you although not cosmetic improvement.
maybe for us we would need higher dose or a different biologic.
let me give u an example, for some psoriasis patient Humira does not work but Enbrel works very well.

the only way we could have an answer would be to try... but as u know it is difficult to get treatment when we have AU. seems like doctors don't REALLY care.
Permalink Reply by Nicolas on January 6, 2017 at 2:08pm

At the moment noone in  forum have had important sides effect?

And any news about sides effect in  trials? 

Is the cream working or better pills 

Thank you...

Permalink Reply by Patchylatchy on January 6, 2017 at 3:27pm
ADML do you have any pics of your progress?
Permalink Reply by Sophie Woods on January 6, 2017 at 8:12pm

yes show us pics if you have them lol   :-P

Permalink Reply by Patchylatchy on January 7, 2017 at 7:09am
I feel little sarcasm in your tone..do you think this drug doesnt work?
Permalink Reply by DaveD on January 7, 2017 at 10:44am

My son is on Xeljanz in the US and is going to UK for 3 months. Can he take his 3 month supply of xlejanz with him on the plane? Will they question him at all? Any paperwork needed other than the prescription bottle it comes in? 

Permalink Reply by singh on January 7, 2017 at 11:21am
Hi teen17 I am from the uk but on xelanz. I went to New York to get my xeljanz and I bought them back with me to the UK. Touch wood I had no issues. But I was a little worried but my Dr from New York assured me that xeljanz is a totally legal prescribed drug. But too be sure I also got a dr note of her explaining that I am on Xejanz and also had her number so if any issues at the airport they could call her to clear things up.

Hope that helps.

Have a great day

Singh.
Permalink Reply by DaveD on January 7, 2017 at 11:33am

Great! thanks, Singh. I will  have him get a note from his doctor as well for precaution. Glad it went smoothly for you.

Have a great day as well.

Permalink Reply by singh on January 7, 2017 at 5:02pm
If he comes to Liverpool uk il happy to show him my city ! Such a cool city! And your welcome
Permalink Reply by DaveD on January 12, 2017 at 10:42pm

Thanks Singh, I will tell him to do so if he goes to Liverpool. He arrived in London earlier today without any problems going through customs.

By the way, just to give an update, he has been on Xeljanz since March 2016 on the standard dose of 2 pills a day, 12 hours apart. He has 95% regrowth on his scalp, eyebrows looking good. Eyelashes are coming along, one eye has lashes on top and bottom and the other has 50% on bottom and about 10% on the top and that 10% has just started so he is hopeful that it will fill in as well. He was completely without hair on his scalp, eyes, and eyebrows and body for about 4 years and had minor episodes of alopecia areata for a decade before that. No history in our family but his life improved dramatically in every way except the hair when he cut gluten from his diet. We only tried that after he had already lost all his hair. He remains gluten free.

Permalink Reply by Patchylatchy on January 7, 2017 at 12:35pm
Hi Singh,

Are you seeing progress frm taking the medicine? I hope you are.
Permalink Reply by singh on January 7, 2017 at 5:03pm
Hi yes I was on xeljanz but my growth wasn't the best as I wasn't consistent with the dose and I never ever tried a high dose. But did get some results but nothing as good as everyone else.

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