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 Frrankie on August 24, 2017 at 11:07am
I have a long way to go but I totally agree. I have not had this much hair sense I was 5. Every month I show improvement but I think due 5o having alopecia totalis for over forty years large dose treatment is needed. If I get cosmetic results I will ask about reducing dose.
My nails are already stronger. Glad to hear you colinits is better. How long have you had alopecia and how,long have you been on 20 MG Xeljanz.
I don't know if alopecia caused you colinitis but it did take out my thyroid. Alopecia is a sneaky bastard.
Permalink Reply by Rascalx2 on August 25, 2017 at 8:36am
Ive had alopecia for 1 1/2 year, never heard of it or knew what it was until i had dime sized smooth bald spot, then all gone in 2 weeks, AU. Ive had colitis for over 20 years, and that has been under control for most part of 15 years, diet helps. What i dont understand is why auto immune like colitis can go into dormancy , w no effects for long periods of time, but why wouldnt alopecia settle down and grow hair? The inflammatory response is just constant for alopecia?
Permalink Reply by Rascalx2 on August 25, 2017 at 8:43am
I wanted to say this; Im on vacation, and often see guys coming across as that they think they are hot shit and cocky, checking themselves out in windows, mirrors posing. I was thinking to myself: I was totally like that, and realized how fast that ego or image of one self can be wrecked.., I guess I had an aha moment of what I focus on when I dont have hair and looks to be concerned about.. Im still concerned how I look, but its limited based on baldness... just had to be honest
Permalink Reply by Frrankie on August 25, 2017 at 10:17am
For me I find having alopecia for basically my entire life ....so far that is, easer. I can't emagine the personal effects alopecia can have after years with hair. I have wondered how or if by personality would be different if I never had alopecia or got it latter in life. I really can't relate to those who suffer from late onset Alopecia.
On a sidenote maybe 20 years ago I did try and get results from DPCP. A topical treatment that agrovates your skin causing hair growth. The growth was better than xeljanz. I quit the job that provided medical so i stopped treatment. DPCP treatment takes a commitment I can't fit in my life today.
What makes me think of DPCP is back in maybe 1973 it was showing possessive results in Italy but could not be used in America due to FDA regulations. Political BS you ask me! With that said xeljanz is amazing and I am greatful for the opportunity to try it! DPCP could have changed my life experiences.
Permalink Reply by katiegirl on August 25, 2017 at 2:07pm
I also tried DPCP prior to xeljanz. While it didn't work for me and I couldn't bear the itch, I have heard it work for others. I know my deem still uses this today for cases of AA
Permalink Reply by Lindzzej on August 25, 2017 at 12:24pm
I understand this completely, ive had alopecia for around 20 years and in 7th grade I lost my entire head of hair, devastated. In high school, thanks to my wonderful derm I had full regrowth and beautiful long thick hair. In my twenties something triggered a major major flare like I've not seen in years. This disease sucks...I feel for everyone and I'm thankful for xeljanz.
Permalink Reply by Lindzzej on August 25, 2017 at 12:19pm
I was just diagnosed w crohns which I did not know is auto immune. Pretty devastated about it and honestly wonder how it affects my alopecia...just thought I'd share. Hard times.
Permalink Reply by Suzie on August 25, 2017 at 12:47pm

Rascalx2, for some people Alopecia Areata is dormant.  I was a teenager when I first had it (and unfortunately no one knew what it was, that was 35 years ago).Most of my hair around the nape of my neck was gone....you could see my neck, that is how thin it became.   My hair all grew back on it's own....no steroid injections, or medicines of any kind.  I didn't get my second bout of it until 4 years ago.....This time I found out what I actually have (AA) and went to a dermatologist.  Began steroid injections (OUCH!); which helped, but the spots kept coming and the shedding was so much!  During my late 20's I developed RA as well.  Since I was already on biologics (Enbrel, Humira and Orencia), I decided to as my rheumatologist to try Xeljanz to help with the RA and AA.  I've since had my patches grow back....It's still much thinner, but unfortunately I might be battling menopause now.

Permalink Reply by Patchesforlife on August 29, 2017 at 8:11pm
I remember there is a hearing for Fda through the NAAF this September. Is anyone joining?
Permalink Reply by Sara on September 8, 2017 at 2:03pm
No new treatment?
Permalink Reply by Katrina on September 15, 2017 at 8:54am
Update: 26 year old female. 16 months since becoming AU, with no prior history. 13 months on Xeljanz. Taking 4 pills a day. Side effects: weight gain, exhaustion, 3 severe colds, 1 enlarged lymph-node, and 1 infected pimple.
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Permalink Reply by Patchesforlife on September 15, 2017 at 3:42pm
hi katrina. does your doctor expect you to take xeljanz for life? congrats fo regrowth

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