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.

-----------------------------

AW:  Other discussions on Xeljanz / Tofacitinib

https://alopeciaworld.com/main/search/search?q=Tofacitinib

 

Views: 927873

▶ Reply to This

Replies to This Discussion

Permalink Reply by sasha1 on May 24, 2018 at 7:14am

I hadn’t previously heard of that one so I’ll definately ask at my next appointment. Thanks so much, and yes, relapses are a pain! 

Permalink Reply by Frida Rupert on May 24, 2018 at 8:18am

Here is an article for dexamethasone - similar strength to oral betamethasone:

https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1346-8138.1999.tb...

also a case study on betamethasone 

http://www.ijdvl.com/article.asp?issn=0378-6323;year=1996;volume=62...

Unlike xeljanz they are not long term but can help growth get started and during flares. A recent xeljanz study used them in treatment resistant to xeljanz and weened off once growth happened.....

anyway way something to chat with your doc about.

Permalink Reply by sasha1 on May 24, 2018 at 8:25am

Do you know if  these both have the same side effects as the Prednisolone? 

Permalink Reply by JG on May 24, 2018 at 8:35am

I was on bethamethason for few months. Insomnia, feeling shaky, stomach pain, weight gain, dizzy, driving car was very challenging. I would not recommend it but we are all different and some people are just fine (as my doctor said). Twice a week 10mgs was probably way too much for me.

Permalink Reply by JG on May 24, 2018 at 8:26am

Frida, what are your thoughts on the alternative to help the growth once on Xeljanz if I can not tolerate steroids? Getting into circle of fungal-bacterial infections. 

Permalink Reply by Frida Rupert on May 24, 2018 at 5:17pm

To be honest I am not sure. You could add another immune suppressants like mtx but a lot of those are seriously hardcore and rough. I only ever (and only ever recommend - don’t sue not a doc here) pulsing  steriods like dex and beta for two concurrent days at the smallest dose possible. I did 5 mgs two consecutive days for a few months then weaned down slowly. My side effects were a little weight gain and some sleep issues but as it was only two days it was not that bad for me. I still do mini pulses if I get a trigger ( If i have to take antibiotics for example -that triggers me I think). Im recovering from a fungal rash at the mo and found epsom salt and salt baths help alot as well as a pinch of borax (google it) in the wash helps as I don’t like antibiotics etc) Also antifungal creams and shampoos (as body wash) can help. Again would reassess if these fungal things become chronic. Saylic acid (acne cream) has had some success in hair regrowth too so it’s a bit of a guessing game.

 If you are Au I would highly recommend lumigan or careprost for lashes and brows- those are really good helpers, and also look into antihistamines. If you think it may help a good dht blocker may enhance results too. It’s a tough road - we are fighting our immune  system while trying to keep it in good working order so the balancing is the key. There are “natural” treatments - but I think they are limited in there ability to help much, but every little bit counts hey! And for me biotin, msm supplements, and gelatin in my juice I feel has helped the quality of regrowth.  

Permalink Reply by JG on May 25, 2018 at 1:40am

Thank you for your reply, Frida! I am AU for two years already and tried most of natural treatments which costs me over 20k. Nothing helped. I will ask my doctor for lumigan prescription next week. Steroids will be out of question for me for sure as I am definitely not tolerating it and would prefer being bald than dealing with side effects. I am taking Xeljanz just a bit over a week and already noticing fluff appears on the head that was smooth for more than 9 months. My doctor is not familiar with Xeljanz and I need to guide her what blood work I need to do beside of what listed in Xeljanz instruction? 

I am also taking LDN, biotin, life probiotics, immune modulators, vitamin D and multivitamin. 

Do you have fungal/bacterial infection from Xeljanz as well? 

Permalink Reply by Frida Rupert on May 25, 2018 at 4:32am

I think the fungal/bacterial thing is mainly cause everybody touches my head (cause it’s fuzzy) and I wear hats etc. I don’t think it was the xeljanz per se. Just weaker immune system and lots of people touching me plus I sleep with my dog so she’s getting more frequent baths- poor dear.... but I tolerate steriods well but antibiotics not at all so fungal/bacterial stuff is hard to knock out. Lots of salt water, Epsom salts and a pinch of borax in my body wash and shampoo works well to knock it on the head. I forgot to mention I also take vitamin d (deficient), and like you LDN.  If you are seeing fluff from the xeljanz already without steriods that’s pretty awesome. Yeah Alopecia coats a lot of money- we are so desperate that we try anything..... at least with xeljanz there is pretty good response rates.

Permalink Reply by Frida Rupert on May 25, 2018 at 6:42am

Forgot to add  - blood work I think needs to monitor kidney, liver function mainly. Almost identical to the tests for those on methotrexate and pred. She’s probably monitored patients on those so it’s pretty much the same...

Permalink Reply by sasha1 on May 24, 2018 at 1:48am

Here are some others, there are also more which are scattered throughout but too hard to find.

Attachments:
Permalink Reply by Suzie on May 24, 2018 at 1:13pm

Sasha, this disease is so unpredictable to say the least....as a teenager I developed this (AA) (and this was 30 years ago and no one knew what I had).  It ALL grew back on it's own with no medicine, no injections no NOTHING.  Then I developed RA after the 2nd child when I was 26.  Throughout the life I had a small patch here and there but was never concerned because it was hidden and it grew back.  Fast forward at the age of 48 and all of a sudden lots and lots of patches, excessive thinning and all.  I asked rheumatologist to be put on Xeljanz after much research and it has helped my RA and the AA.  But after all of my patches have filled in I now have developed Androgenic Alopecia......unbelievable!  I'm not sure if the Xeljanz will help this or not.....Hang in there.  Hopefully your body will adjust and will stabilize and keep working for you.

Permalink Reply by thehairartist on May 25, 2018 at 2:13pm

RSS

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service