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 LJBMD on January 31, 2019 at 6:55pm

Hello: 15 yo daughter was diagnosed with alopecia areata 5 weeks ago. I have read several of your posts. What dermatologist did you go to?  Any help/insight would be greatly appreciated 

Permalink Reply by singh on July 10, 2017 at 3:22pm
Permalink Reply by cws on July 10, 2017 at 3:29pm

I have been watching for that. Good to know. Hopefully they were able to still continue to some extent while satisfying the FDA. Having something for on label use will help with insurance fights. I wish they could fast-track it given what has already been proven.  

Permalink Reply by singh on July 10, 2017 at 3:35pm
Yeh it's good to know it has been lifted, I spoke to the ceo of the company and she told me drugs can take 8-15 years to come to market however because ruxolitnib is already approved and given all is well with ctp-543 trials it could be approved by 2020-2022.

Am looking forward to see what the phase 2 and 3 trials brings.. Hope it can be a liable treatment.

I personally think it won't be out until atleasr 2022 but still more treatments coming out the better.

My dr told me genome therapy is likely to be the cure but we are years away from that.
Permalink Reply by Patchesforlife on July 12, 2017 at 10:47am
Permalink Reply by Suzie on July 12, 2017 at 11:30am

This is awesome!  Thanks for sharing!

Permalink Reply by Frrankie on July 12, 2017 at 11:42am
Isn't it good be acknowledged.
Permalink Reply by lu391 on July 12, 2017 at 4:06pm

An Indian pharmacy wrote to me that they have the generic xeljanz drug, the name is tofacinib 5mg or even 11mg, the price of 2 packs 11mg is $ 900. Has anyone ever tried to buy it? it's safe?

Permalink Reply by singh on July 14, 2017 at 12:31pm
Be very careful lu391, as you don't quite know what is in the generic version they make. I would get pfizer to test it before use.

Also that quote is very high for generic I've been quoted a lot cheaper.

However if it is legit version then I feel it's great news and affordable.
Permalink Reply by Frida Rupert on July 20, 2017 at 11:30am
Real Xeljanz is sold in India for approximately $390 US per 60 tabs. They maybe adding extra for sending it ect but also the generic is currently being taken to the court for breaking patent rules.in India the courts often rule against big pharma so there is every likelihood that a generic will be easily available (to a domestic Indian market)soon. Just be a tad wary. I've had great success out of India but my sister lived there and between her, her wonderful doctor, her very accomodating friends and the assistance of my incredible immunologist I was able to get real Xeljanz.... even with all this support ( -and all legalities followed to the tee) it was a stressful process.
Permalink Reply by Katrina on July 16, 2017 at 8:41am
Sharing my monthly update:
14 months from onset of rapid diffuse AU (no prior personal or family history of alopecia) :: 11 months on Xeljanz :: 6 months on Cortisone injections.
Pleased with my progress, even though it is slow. Back of head is getting long enough to put into a ponytail! But I am still thin on the top and in the front of my head... not sure if I am still missing hairs up front or if they are just baby hairs. It's hard to remember what my hair line used to look like. Either way, I'd say I am over 90% coverage. Brows are stable... maybe 80% coverage. Lashes are stable... left lashes are 75%, right lashes are 50%... Scalp shedding is still around 30 noticeable hairs a day (i.e. in a comb, on pillow case, or on hands after shampooing). Blood work has been checked every three months and is still normal.
Right now, weight gain and breakouts are the most frustrating side effects for me on Xeljanz. Still on 20mg/day for now (have been for about 5 months, prior to that I was alternating 15/20mg for 3 months, and prior to that I was just on 10mg).
Also not happy with some dimpling that has happened on my right brow from Cortisone shots. There are 3 big, purple dimples in my brow. Hoping they go away soon...
Other things I am doing in addition to Xeljanz and Cortisone shots: I stopped using minoxidil because it was making my heart race. But I've continued rubbing essential oils on my scalp once a day, taking Hair Skin Nails vitamins (Biotin) twice a day, using a TheraDome Laser Helmet a couple times a week, using RevitaLash and RevitaBrow serums once a day, getting regular allergy shots, and avoiding foods I have known allergies to.
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Permalink Reply by Patchesforlife on July 16, 2017 at 8:48am
Congrats on ur progress..very nice results

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