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 Patchylatchy on December 13, 2020 at 11:18pm

Hi everyone.  I have hashimotos and when my doctor and I want to check the condition status we check something called tpo antibodies. Typically when tpo is high it means the attack is stronger and when its lower it means im closer to remission. So im wondering why isn't there a blood test that specifically test for alopecia antibodies? Would AU have high number of this unidentified antibody while people who have spots have a lower number. Hope someone can think with me or answer whether they know of such antibodies

Permalink Reply by mastros on January 8, 2021 at 4:38pm

Hello,

I have too hashimoto and it's a great question. 

Afaik, they are fully aware of which pathways each JAK inhibitor blocks and essentially which T-cells are reduced. 

I guess it's a financial matter to prioritize the creation of bloodwork that measures alopecia specific markers. Maybe I am wrong though. Nevertheless, a really interesting topic to research about. 

Permalink Reply by ariel015 on December 20, 2020 at 9:05pm

Hi guys! 

I wanted to post an update on my progress with xeljanz and see what you all thought. Just as brief context I started 10 mg/day of xeljanz in April 2020, and have been on 20 mg/day since late August 2020. The 3 patches visible in the photos are still actively shedding, but I would say I have less active patches in general than I did prior to xeljanz and the edges are starting to grow back. Aside from those 3 spots everything else looks good and the spots I used to have on my arms regrew. I should mention I did have some regrowth with corticosteriod shots in the past which is where some of the longer regrowth pieces are from. I had one round of corticosteriod shots in october in and think Im due for another round in those couple of newish spots. Would love to hear if anyone else on a similar dose is still experiencing some loss/anyones thoughts. Thanks :) 

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Permalink Reply by San on January 2, 2021 at 9:15am

Hey Ariel. That's a great growth. Can I know if you were having AU/AT or AA

Permalink Reply by ariel015 on January 2, 2021 at 1:48pm

Hi San,

I have AA and have had ongoing patches for the past 3 years. The majority of patches have been on my head but I have had a couple on my arms. Hope that helps!

Permalink Reply by Maree on January 3, 2021 at 3:06pm

Hi everyone, I have a question if anyone can relate. 
The end of May I tested positive for corona virus , I was a symptomatic. 
I’ve been on 20 mg of Xeljanz since 2017 and recently started having a flair up in October, I have been getting cortisone shots every four weeks , they have been making me uncomfortably  itchy and aren’t doing much . Has anyone experienced any hair loss after testing positive and how much hair loss was there ?? 
im freaking out about it which isn’t helping I know !! 
Thanks Maree 

Permalink Reply by Frida Rupert on January 4, 2021 at 7:21pm

Hi Maree, I think the main thing is to just plough through. I haven’t had covid but I imagine it is probably similar to having something like glandular fever or any fever really, it can cause a flare, but in other cases most recover from flares and can continue growth without going back to baseline. You could chat to your doc about a short steroid pulse or temporary increase of dose for say 3 months (an approximate hair cycle).

I know it’s so anxiety inducing to see sheds or patches, in my personal experience any shed on xeljanz are short and never as severe to go back to the pretreatment baseline..

Permalink Reply by Patchylatchy on January 3, 2021 at 11:39pm

Hi everyone I wanted to let you know there is a group on fn called alopecia and xeljanz that really helps.

Permalink Reply by Maree on January 4, 2021 at 8:44pm

Thank you for responding, I keep asking my doctor for the steroid pulse but he won’t give it for some reason ! 
I’m on the highest dose already 20 mg a day . It’s the burning and itchy feeling on my scalp that’s making me so nervous 

Permalink Reply by Starshine on January 5, 2021 at 5:52pm

Hi everyone.  I am one of the long-timers on this forum and have been on Xeljanz since 2014 with full regrowth (had universalis) and no relapses.   Up to now, my insurance has covered, reluctantly, but this year they are firmly denying.  I was wondering if someone could take a little time and walk me through ordering from Beacon.  I am really terrified, but have no choice.  I know I need to do the quick order form, but from there, I'm lost.  Is it better to order the 5mgs or the 11, what is the best way to pay (direct wire through bank or Transferwise), and is EMS the best for shipping?  I have never traveled out of the US, so I am totally in the dark about customs or what to expect.  Any advice would be greatly appreciated.       

Permalink Reply by Nat on January 5, 2021 at 7:20pm

Hi Starshine,

You do the quick order, then Mouree will send you an email to confirm the number of boxes, your address, and the shipping method. Then you will get an invoice with the payment instructions. You will need to email back the signed invoice and the proof of the payment. 

11 mg pills are $27/box of30. 5mg $15 per 30. I ordered 11mg because the shipping box is smaller and less chances to by stopped by the customs. I normally buy supply for 2 years - no problems so far.

Transwise is easy and cheap to pay, EMS is the best shipping option. 

Ask if you have any questions.

Permalink Reply by Starshine on January 6, 2021 at 8:13pm

Thank you so much, Nat.  I think I've got this, but not sure how Transferwise works.  Can you explain how that works for payment once I register with them.  

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