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 Newjack on August 2, 2018 at 5:51pm

Has anyone needed to get minor surgery while taking xeljanz? Is it ok?

Permalink Reply by kevin on August 2, 2018 at 9:44pm

a surgery of what because of xeljanz

Permalink Reply by Newjack on August 3, 2018 at 12:20am

Not because of xeljanz, unrelated. Just wondering if something like removing a molar or access you should stop taking xeljanz. I am wondering if it will interrupt the healing process. 

Permalink Reply by Football fan on August 3, 2018 at 12:47am

Had to have a tooth pulled While taking xeljanz and I was fine.Sometimes a Doctor will prescribe antibiotics for a few days.

Permalink Reply by Frida Rupert on August 3, 2018 at 5:11am

Hi Newjack- not sure if this helps but when I went to hospital earlier in the year- the doctors thought I had appendicitis - I didn’t- it was due to a tummy issue (you don’t wanna know) ... but they were prepping me for surgery - nil by mouth ect, until they could get the proper scans and tests run... the doctors (admittedly the didn’t know much about xeljanz or Jak inhibitors -ha - they do now - I gave them an earful (nicely- but any chance to educate!!! Lol) - anyhow they told me not to stop taking them because they thought my immune system might start raging.., anyhow no surgery was needed, but outside of being concerned that the issue was xeljanz related- it wasn’t (I’m politely declining to specify - you can probably guess)... they didn’t seem concerned about me being on the meds re the planned surgery... which never happened... so I guess if they aren’t worried with appendicitis then I’m not sure if they’d worry re tooth extraction....but totally could be wrong.

Permalink Reply by mastros on August 4, 2018 at 6:07am

hi all,

here is my update. since may I have performed a couple of times injections on small spots that have showed up in different places (mostly in the biggest area on the upper left side of scalp). 

My beard has grown a lot and I m including it in the photos for first time.


My only concern is that recently has been hot where I live, I got no AC, I store Xeljanz in the fridge and I m not sure whether its potency is still intact. 

I also noticed that the acne on my back is less which makes me worry about it.

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Permalink Reply by Frida Rupert on August 4, 2018 at 8:58am

Wow fantastic! It’s amazing how the Patches are all filing in and it’s thickening  up. So great to see! I am in Australia  where it’s hot in summer and reasonably cold in winter (not like Canada or Russia) but chilly. My xeljanz is just stored in a cupboard in the kitchen - but I don’t think temperature would impact it unless it was extreme - like over 50 Celsius or -20 Celsius - since starting xeljanz I’ve had 35  Celsius to 40 Celsius during summer and down to negative 1/2 in winter and my stock seems fine... I’m afraid I have no real chemical informatjkn but from personal experience I don’t think it would matter. 

Permalink Reply by mastros on August 4, 2018 at 2:57pm

thanks for that :-) it made me feel more calm. I live in Amsterdam and recently there has been continuous heat sometimes going over 30 Celcius which for here is considered "heatwave" :-P ....

Permalink Reply by Carlie on August 4, 2018 at 2:10pm

You should send these pictures to one of the doctors who study Alopecia! It's wonderful to see the difference from every other month. Thank you for sharing, it's very encouraging. 

Permalink Reply by mastros on August 4, 2018 at 3:01pm

I do see Dr. King for Yale and Dr. Harris from Umass and a doctor here in Amsterdam. Xeljanz has really worked on my body for now :-) going to 20mg for 10mg was the big step which I think made sense since I m close to 100kg :-)

Permalink Reply by Shad on August 6, 2018 at 8:02pm

Hi mastros, glad to see your hair all back! did you see big difference when you changed 10 mg to 20? I changed for 2 weeks then because I cannot afford to buy 2 box for a month I am back to 10 mg and 40 mg prednisone daily. It’s like 6 months and going slow. 

Thanks 

Permalink Reply by mastros on August 9, 2018 at 3:07am

10mg did nothing for me. 3 months  after being in 10 mg, I went to 15 for 1 month and then to 20mg. Going to 20 was the move that started my body reacting. Before that nothing was happening. 

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