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 Anna on March 2, 2018 at 8:11am

Amazing growth Frida! May it continue apace!

Permalink Reply by Frida Rupert on March 2, 2018 at 5:08pm

Soon I will be looking at your progress pics and being so happy about your response too. Early days are hard but the rate is response is amazing in the long term! Xx

Permalink Reply by Kathy on March 2, 2018 at 8:28am

Awesome pics Frida...so this is all because of Xeljanz? Congrats!

Permalink Reply by Frida Rupert on March 2, 2018 at 5:13pm

Hi Kathy.

Thank you Kathy! i do steriod pulsing two days a week though I am in the wind down phase of that now growth is well and truely happening. If you search on my name and steriod pulsing I detail my full treatment regime. I followed a  regime used in study done over a longer term (18 months) that had a quite high success rate. I have linked the study there.

i think complimentary treatments can help the quality of regrowth but xeljanz is the key to it actually working. Happy to go into more detail if you are interested!

Permalink Reply by Newjack on March 2, 2018 at 8:30am

Looks wonderful, think of it as it won't come back because it's in remission. If it does come back it won't be as bad as it was when you went totalis and Xeljanz will just need to work it's magic when it starts calming down. 

I'll post pictures of my progress later tonight

Permalink Reply by Shad on March 2, 2018 at 10:58am

Congrats Frida , so happy to see your hair, 

Just wondering after how long you got this  result ?

Permalink Reply by Frida Rupert on March 2, 2018 at 5:19pm

Thanks Shad, I am a slow responder. I started at 10 mgs per day August/September 2017. Had to increase my dose December. The growth on my scalp didn't really start to come in until end of December 2017 and most of this growth has happened in the last two months. My lashes and brows were Responding at 10mg per day by end of November/ December  but my scalp needed 20 mg/ 25 mg alternating days. To get going. Hope to drop to 20 mgs and then 15 mgs but in no hurry!

i am proof that even slow responders can get a wonderful result!

Permalink Reply by Frida Rupert on March 2, 2018 at 5:22pm

Thanks Newjack looking forward to seeing your photos-each time more growth! Yes I have a plan in my head, if I have losses here or there I will try not to freak out- xeljanz will hopefully keep things manageable and I need to focus on the good! 

Permalink Reply by Toxicmosquitoaf on March 2, 2018 at 5:17pm

"It it has been a weird week. I feel my hair has progressed really well BUT I have noticed now my anxiety about losing is up too. It's almost like now I have more to lose if i do lose again... ugh... I know you guys understand- at first the relief of growing hair is so great you don't feel so anxious and then all of sudden you get very worried about loosing it again."

I relate to this so much <3 :(

Permalink Reply by Frida Rupert on March 2, 2018 at 7:21pm

Anxiety is one of the hardest things about this alopecia I reckon. Even years after we recover I'm sure there will emotional scars and anxiety. Good to be able to share with others who understand though and have lived the experience.

Permalink Reply by singh on March 4, 2018 at 10:32am

Hi frida are you on 25 mg a day ? Does that mean everyone is different in response to xeljanz ? 

This ie great for the non responders at average dose.

kind regards 

Permalink Reply by Newjack on March 2, 2018 at 5:51pm

I'll be at 2 months Monday. 

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