JAK Inhibitors Xeljanz Tofacitinib - 3 year update

Hi Everyone!

It has been a while since I have posted anything on this website and I am glad I can post with some positive news! I have had alopecia universalis since June 2014. 

I started taking the Tofacitinib tablets 3 years ago, starting in February. I started with 10 mg i.e. two tablets everyday. Within 2 to 3 months, my hair fall was noticeably less and my hair started to grow. I got regular blood tests every 3 months to monitor my levels. In one of the regular check ups, my urea levels were a bit on the higher side which freaked my father out. So I reduced the dosage to one tablet i.e. 5 mg. This was not a good idea since my hair started to fall again. Within a month, I went back to 10 mg. 

This medicine is quite expensive so I was fortunate my parents could afford it. I am currently based in the Netherlands and I am getting the medicine under my doctor's insurance! So I don't pay anything for it. I am not sure how exactly it works but I think since the medicine is still in the trial phases, I am considered as a trial patient and do not have to pay for it with my insurance. So if anyone is based in Europe, please talk to your dermatologist about your options.

My doctor back home in Dubai told me that a topical form of the medicine is available. This should be safer since you only have to apply it directly on your head. I haven't looked into this yet.

Jak Inhibitors act as mild immunosuppressants so it is supposed to be relatively safe for life time use. 

I cannot even express the joy in having my hair back. I am grateful to my parents and my friends for their support. I try to remind myself everyday that I got very lucky I was put on this trail. 

Please feel free to hit me up with any questions!

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Permalink Reply by Kojack on February 8, 2021 at 12:30pm

Are you continuing to have success

Permalink Reply by Ithastogetbetter on February 9, 2021 at 7:25am

Yes! No hair fall and hair is growing back. Blood results are also normal. 

The question my doctor is asking me now is whether I would like to try reducing the dose and see if it works.

Permalink Reply by 3ebdie on February 9, 2021 at 5:47pm

Are you on 100 procent regrowth now? Amazing results!

Permalink Reply by Ithastogetbetter on February 10, 2021 at 2:44am

Yep! Completely grown back. Each got a hair cut to shape it and it's grown since.

Permalink Reply by Wahida.R on February 24, 2021 at 4:18pm

Hi. So glad to hear ur succes story. Im also based in the netherlands.  can I ask which doctor treated u? As i cant go anywhere else for treatment, it world be great if i could get treated here  

Permalink Reply by Ithastogetbetter on February 25, 2021 at 2:33am

Dr. Thio at Erasmus MC

Permalink Reply by ling tong on February 26, 2021 at 8:58am

Hi Ithastogetbetter, congrats on your hair growth. You look great. My 17 year old daughter has been on xeljanz since 2 years. She is on 15mg. Her growth is nowhere like yours. Even though she doesn't have bald patches, its very thin and doesn't seem to grow long either. Could you please let me know if you are doing any particular diet, taking any supplements etc. Thank you in advance.

Permalink Reply by Ithastogetbetter on March 1, 2021 at 2:40am

Hi! Thanks :)

I take vitamin D supplements but I am not sure if that helps with alopecia, although I do remember reading something about vitamin D when taking immunosuppressants. Maybe you could check your daughter's vitamin D levels?

Also, I follow at least 90% vegan diet so at home, i do not eat meat or dairy. Occasionally, when we order take out or eat out, I eat vegetarian and once in a while, I might end up eating a ham and cheese croissant (with a lot of guilt hahhaa) . Idk if the diet helps, some people say that meat and dairy are quite inflammatory. It seems to help me but then again, every body is different. Maybe you could explore this as well!

Best of good luck! Would love to hear an update.

Permalink Reply by NicoleT on February 28, 2021 at 9:20pm

Wow you look amazing!! Congrats!  
I started tofa exactly 3 years ago and I went from 100 bald and no eyebrows or eyelashes to full regrowth. My new profile pic is my hair now but I’ve had a lot of haircuts along the way. 
I was never able to get insurance to cover so I’ve been on the generic from bengladesh shipped to USA. 
No side effects. So grateful. 

thanks for sharing. 

Permalink Reply by Ithastogetbetter on March 1, 2021 at 2:41am

Thank you!! :) Your hair and you look great too! So happy to hear it is working for you as well.

Hopefully, once the medicine is approved and removed out of the trials, you can get it under insurance but at least you have an option for now.

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