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 Frida Rupert on January 19, 2019 at 5:09pm

https://my.clevelandclinic.org/departments/dermatology-plastic-surg...

Hi guys,

having my usual Sunday morning google and research session and came across this article. It covers an earlier study that I had read about but it is presented in a better format. It shows how long it can take for xeljanz to kick in so that you can have an idea about where you might be up to in treatment. Also presents some of the issues some people have on it- for example - blood tests being elevated, herpes zoster flares, uti’s and how the docs treated it. Some temporarily took the patients off, some discontinued and some lowered dose. Of interest I was reading an article re surgery on immune suppressants ( relatng to RA but I thought it would be appropriate for us all to know too)- docs recommended coming off between a week to 2 days before surgery - just FYI.

i found it interesting and well presented. Of note - some people have issues with this med- I am very lucky to feel better on this med then off. It’s such an individual thing.

Permalink Reply by mastros on January 19, 2019 at 6:54pm

thanks for sharing.

really concise article. it would be nice for someone to do a review article of all the publications around JAK inhibitors and alopecia.

what is the article related to the surgeries?

Permalink Reply by Frida Rupert on January 19, 2019 at 8:51pm

https://www.google.com.au/amp/s/orthobuzz.jbjs.org/2015/02/23/stopp...

Here it is, it’s written regarding people who have RA but it’s applicabke to us who use Tofacitinib too.

This article recommends 2 days before, others up to 7 days. I’m still trying to find one about starting post surgery and will post if I can find anything. I know that surgical procedures can cause flares in some autoimmune sufferers so I just googled on a whim and found the answers interesting. 

Permalink Reply by mastros on January 20, 2019 at 9:25am

Thanks a lot. super important and interesting indeed.

The link you sent uses info from a paper published in 2015 here https://www.sciencedirect.com/science/article/pii/S0049017215000098

"There is no published preclinical or clinical data regarding perioperative infection risk in patients treated
with tofacitinib, although there is an increased overall risk of infection ascribed to use of this drug(61,
62). The half-life of tofacitinib is 3 hours; 2 days off the drug prior to surgery appears adequate."

The author is Susan M Goodman (https://weillcornell.org/smgoodman). 

A later article of hers in 2017 https://onlinelibrary.wiley.com/doi/pdf/10.1002/acr.23274 

says "Withhold tofacitinib for at least 7 days prior to surgery in patients with RA, SpA including AS and PsA, or JIA undergoing THA or TKA (Table 2). This recommendation was based on indirect evidence from systematic reviews and meta-analyses of tofacitinib versus placebo (and occasionally versus control treatment including nonbiologic DMARDs) in nonsurgical patients showing that the risk of serious infections was increased with tofacitinib, with an incidence rate of 2.91 (95% CI 2.27–3.74) (97) and higher risk of all infections, with an RR of 5.7 (95% CI 1.8–18.1) (48). Although this drug has an extremely short serum half-life, little is known about the duration of immunosuppression after the drug is withheld, although indirect translational data suggest that host defense returns to normal at 7 days. Therefore, the Panel recognized that the recommendation for the duration of withholding may change in the future, as physician and patient experience with this drug grows"

I think there is a lack of enough data to support an exact guideline yet. Let's wish something more concrete and validated gets published soon.

Permalink Reply by Frida Rupert on January 24, 2019 at 3:02am

Hi guys,

think im going through a tiny episode. I have had a lot of stress at work of late and also my 18 year dog passed- I think there’s a direct link. There are no patches, and the shed is probably not noticeable to people who haven’t been through this experience - before I noticed no hairs coming out, now I find a few here and there on my clothes and in the comb. Of course the anxiety that comes with this condition can make even the smallest sign send us into panic mode. So I’m recommencing a pulse treatment for the next month or so, getting some Valium (lol) and hoping to ride it out. So funny, through out all the stress I could almost feel the load on my system and hair, I was trying to resolve it so the stress would go away but life sometimes makes escaping stress very hard, I really do need to find methods to manage stress better. So wish me luck, fingers crossed this “shed” stops and I can kick on with the progress. I’ll keep you all updated!

xx

Permalink Reply by Nat on January 24, 2019 at 7:34am

Good luck Frida,

Are you going to increase the dose temporary?

Permalink Reply by kevin on January 24, 2019 at 10:56am

frida do not worry especially it happens sometimes me too I had a period where my beard hair fell over a period of two weeks and it stops stress especially not. try to take an anti inflammatory like bethametasone to calm the fall. relax and above all no longer look at your comb you will see your fall will decrease profits from your hair. Do not worry if your hair really pulls by pulling on it without pain and all the hair follows as well, but that's not your case so it's ok. you have always been there to help people here you deserve the happiness

Permalink Reply by kevin on January 24, 2019 at 11:23am
Permalink Reply by kevin on January 24, 2019 at 11:26am

first time in 20 years that I have eyelashes

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Permalink Reply by Carlie on January 24, 2019 at 12:10pm

This is wonderful Kevin! What dosage are you taking and is it the generic brand? Here's my progress, I've been taking 20mg a day of the generic. First picture was on Dec.4 second Jan 20.

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Permalink Reply by Nat on January 24, 2019 at 12:46pm

Carlie,

The progress is amazing!

Permalink Reply by Carlie on January 24, 2019 at 1:19pm

Thanks you, I do believe that pulsing was the key. It seems to be taking forever, the only good thing about this disease is it slow down time.

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