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 singh on February 10, 2019 at 10:09am

Thanks so much for the kind words Tc. Will look into that ! 

Kind regards.

Permalink Reply by singh on February 10, 2019 at 10:12am

Thank you so much Frida, you honestly are a great person ! I pray your hair will stay! I will look into all of this and update you all on my progress. What I’ve learnt is not only getting the hair to grow but maintaining healthy hair is key too. And try not to stress to much.

Thank you.

Singh.

Permalink Reply by Newjack on February 10, 2019 at 7:13pm

Hey Frida,

Is something up with the website? Cant seem to respond inline to your message.

Thanks for the encouragment and hopeful outlook! I hope everything is getting better with you as well. My shedding seems to be on and off and may have spoke to soon. One day I'll get 5-15 hairs from the shower which is normal, then I will get 20-50 and I can see it clump up a little in the drain which looks devestating. They all for the most part have the bulbs.

My hair started getting a little tingly, but no where near the burning feeling I had at the begining of january. I think it is headed in the right direction and I think velus hairs started to show in my spots. 

General shedding is happening, and it isn't AA. but there are AA spots on the side of my head.

I am starting to take Trans Resveratol as well..

Permalink Reply by Newjack on February 10, 2019 at 7:13pm

Hey Frida,

Is something up with the website? Cant seem to respond inline to your message.

Thanks for the encouragment and hopeful outlook! I hope everything is getting better with you as well. My shedding seems to be on and off and may have spoke to soon. One day I'll get 5-15 hairs from the shower which is normal, then I will get 20-50 and I can see it clump up a little in the drain which looks devestating. They all for the most part have the bulbs.

My hair started getting a little tingly, but no where near the burning feeling I had at the begining of january. I think it is headed in the right direction and I think velus hairs started to show in my spots. 

General shedding is happening, and it isn't AA. but there are AA spots on the side of my head.

I am starting to take Trans Resveratol as well..

Permalink Reply by Frida Rupert on February 11, 2019 at 8:29pm

It’s doing the same thing when I try to hit reply too!  Must be the site. I think the fact the tingling isn’t as bad as last time would have to mean that the inflammation isn’t nearly as serious so the loss wont be as significant . You have such thick hair that even with clumps coming out it would take a lot to notice the loss, but alas I know that’s not the issue... the unknown.... that’s the issue. You are a responder- which means the jam pathway is where the inhibitation needs to happen. People who aren’t responders have some other pathway which is causing the hairloss. As you do respond to the meds, flares may come and go but ultimately you know that your body responds when those pathways are shut down (Jak 3 I believe). So if you have a flare, once the stress or reason for the flare (surgery, stress, injury) subsides you’re body will once again grow the hair. I personally think my AU was a response to infection, antibiotics and stress- all 3 togeather just hit me like an axe. I think the trigger to this shed in you probably was the surgery, the abscess and maybe any anti infection meds post surgery. Once your body heals (which I think it has and this is about the extent of your loss) I am pretty sure you’ll be growing again in no time. There are people who don’t respond - I think the theory is that the alopecia may not be either a) due to the Jak pathways or b) due to the Jak 3 pathway. I think for them the issue needs to be looked at via gene therapy and sequencing, stem cell manipulation etc BUT this entirely too scientific for me to totally understand. So just hold on to fact you respond to toficitinib - so you will grow it all back!

Permalink Reply by Starshine on February 12, 2019 at 6:33pm

My 5-year anniversary on Xeljanz is coming up so I thought I would post a picture to give encouragement to anyone starting, or having a slow response, to Xeljanz.  I am one of the first pioneers, along with ADML, the founder of this thread.  We both started Xeljanz at about the same time after consulting with Dr. King, who is an amazing doctor.  I did respond, after about a month, but my progress was slow until I upped the does to 3 pills a day along with injections.  I have stayed at that does until about a year ago, when I dropped to 2.  I have had no side effects or lapses to date.  I am very thankful for all the support and encouragement I received from this site.  This condition is emotionally devastating and Xeljanz truly gave me my life back.  Stay strong and don't give up even if you don't think it's working.  Some people take longer than others to respond, but the end result is definitely worth it!   

Permalink Reply by Nat on February 12, 2019 at 7:44pm

Thank you for your post Starshine! You give the rest of us some hope!

Permalink Reply by mastros on February 13, 2019 at 6:56pm

congrats sunshine. Being stable for such an extended period of time makes me calmer for the future. 

I have to also endorse Dr. King as an amazing doctor indeed. super professional and compassionate.

@newjack I saw you have been asking for people having influence after having a surgery. I would assume that the surgery itself could put some stress to our bodies and this could trigger the immune system to work a bit harder and maybe the antibodies related to alopecia.

In general, also for avoidance of infections is advised to stop temporarily the medication before the surgery and also wait a bit in the post-operative period.

Considering the fact that we are in the stone age of understanding how autoimmunity works and in our case autoimmune alopecia, i think the triggers could vary vastly. 

Last but not least, I do have to say that this thread is golden. It contains encouragement messages, offers a place to ask questions and express ourselves. It made me wonder, who created it, who funds it to be operational, who maintains it?

Permalink Reply by Newjack on February 13, 2019 at 7:24pm

@mastros 

Thank you, I just got my blood test today and it showed no signs of infection even though I have a fistula tract healing. The surgery I had was just to drain an abscess that caused a fistual. I know have a drain and it's slowly closing. I don't think it's considered an infection anymore .

I am on 20mg now and I have 4 spots all got larger but I have been on the increased dose for only 3 weeks. 

When you increased your dose when did you start seeing changes?

Permalink Reply by mastros on February 13, 2019 at 7:37pm

@newjack I havent decreased and then increased back. I started on 10mg for 3 months and almost nothing was happening. Then I increased to 20mg and after a month I started seeing results. All this when I was in my full fledge losing hair phase (had lost 80% of my scalp).

Permalink Reply by Frida Rupert on February 13, 2019 at 8:12pm

Starshine- gorgeous! Thanks for sharing and being a pioneer! Without the early contributors on this forum in particular many of us would be living a very different experience! 

Permalink Reply by Newjack on February 13, 2019 at 9:08pm

Thanks mastros 

When on the increased medication did you start seeing your 20% of your hair stop falling out?

I've been seeing less and less every day but it ovbiously stoll concerns me. One day I might see 15 hairs in the shower .

The next day 50....

Just trying to gather my thoughts. I never took xeljanz with hair .I was AU

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