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 Rascalx2 on June 19, 2017 at 8:45am
My nails are fine .. i mean good, i only had brittle , and cracks when alopecia first hit. That has cleared up. I wouldnt take xeljanz just for nails .. I just want freakin hair!
Permalink Reply by Frrankie on June 19, 2017 at 10:03am
I understand. Funny my nails might be the only reason I stay on xeljanz.
Permalink Reply by bibby on June 19, 2017 at 9:12am
Hi Ben. What study was the derm referring to when he said the results were not good? From my research the results on most studies have showed the results were 70% positive
Permalink Reply by Christopher's_mom on June 19, 2017 at 8:24pm

Hi Ben,

I don't blame you for wanting to increase the dose.

Xeljanz is so new an established protocol hasn't even been issued for maintenance. I'm not sure a protocol even exists for alopecians using it off-label to grow hair.

Are there any other doctors in your area?

Northwestern University in Chicago prescribes Xeljanz and they're also doing a research project on a different drug. It's double blind so half the people get a placebo.

My son isn't enrolled in that study because he's responding to Xeljanz.

But his dermatologist said he thinks there will be an effective treatment soon since so many pharmaceutical companies are interested and involved.

Permalink Reply by rmoore on June 20, 2017 at 7:57am

My rheumatologist just started me on Xeljanz XR 11 mg once a day for AT (I don't have RA).  I have only been on it 3 days.  After reading these posts I'm worried my dosage is high to start off.  I also take plaquenil, and follow the Autoimmune Protocol.  I have never felt better, I might add.  I'll keep you posted.

Permalink Reply by Patchesforlife on June 20, 2017 at 9:28am
Thank yiu. How are yiu obtaining xeljanz? Copay ot insurance?
Permalink Reply by rmoore on June 20, 2017 at 2:56pm

No, my insurance won't cover it for me.

Permalink Reply by Christopher's_mom on June 20, 2017 at 8:49pm

My 17 year old son takes 5 mg. twice a day.

I think that's what most people start at so you don't seem to be starting at too high a dose.

Permalink Reply by Patchesforlife on June 20, 2017 at 9:24pm
How old is ur son? Also dod he have his hair back?
Permalink Reply by Christopher's_mom on June 21, 2017 at 7:49am

My son began shedding hair August 2016. Within a couple of weeks his hair began falling out in clumps. Within a month or so from the initial loss of hair he had 50% loss of hair on his head and shaved it. Around December he noticeably lost some eyebrow and eyelashes. Hair on his legs and arms disappeared.
He began Xeljanz in February and only once have I seen his head and that was in April at the doctors office. At that time he had 50% of his head covered in patches of 2 inch long hair. He has eyebrows, eyelashes and hair seems to be growing on his arms and legs a bit so I believe Xeljanz is working. However, my son still wears a hat and won't allow me to see it so I can't say what his progress is. He has a dr appointment in July so I'll report back then, but I believe that the rate he was losing eyelashes and eyebrows before being on Xeljanz he probably had well over 50% hair loss on his head.So in sum, I believe it's working for him.Wish I could look and determine for sure.

Permalink Reply by Sara on June 21, 2017 at 8:20am
Do you have any information on working on stem cells for alopecia?
Permalink Reply by Sara on June 21, 2017 at 8:23am
After removing the xeljjans hair does not cause problems?

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