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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
Replies to This Discussion
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Permalink Reply by SabineTawni on
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I was wondering the same thing, Joja101. Also can you get either the topical form or the oral form if you order from them?
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I know Pfizer has PF-06651600 in phase 3 now but it’s been fasttracked so I think if all goes well it will be out by end of 2020/21. As I have heard they can put it on the market if it meets certain end points to evaluate its safety where then although available for prescriptions has a phase 4 where it further looks into human safety.
Kind regards.
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Just some random thoughts...
Although we're grateful to the research & medical communities that developed them, JAKs are only a short term temporary band-aid for now. We shouldn't and can't stay on them for long, or we'll be dealing with much more serious issues than just our hair, as devastating as losing it is. We cannot expect to suppress a human immune system long term without serious consequences.
In College (feels like 100 years ago), on my first day of Advanced Physics, the prof started his lecture with a simple statement: There's no such thing as cold, only an absence of heat. It changed the way I perceive things for the rest of my life.
There's a common misconception that auto-immune related Alopecia is the result of an immune system gone rogue, attacking itself. It isn't. Our immune systems are actually working the way they were intended, to protect us. It's on high alert and overactive yes, but that's because it's detecting thousands of foreign invaders - our hair follicles. The underlying issue is that our hair follicles lost their IP (Immune Privilege).
IMHO, we need more research and development in restoring the hair follicle IP.
There's a good article published here; Journal of Investigative Dermatology Symposium Vol 19, Issue 1
So I guess one question is; Should we, as a community affected by this illness, support and encourage Pharma companies to develop more JAK derivatives targeted for Alopecia, or more research into restoring HF IP?
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Permalink Reply by Rascalx2 on
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Anyone have elevated eosinophils w blood work? Its used as a marker for some things , was wondering anyone do some research w it to understand the numbers
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How elevated?
Could be something as benign as your body fighting a parasitic infection, fungus, or allergies.
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Sounds good but that will probably be about 25 or more years down the road.Every disease uses quick fixes but does not solve the real problem.I have thyroid disease I take a pill that mimics the thyroid there is nothing out there to stop the immune system from attacking the thyroid in the first place.id be happy to have a a couple drugs that insurances will cover and works.What your suggesting sounds great but not in my lifetime.
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I agree football fan. Tc you post such measured supportive and considers posts and your recent post froze me into thinking OMG whet am I doing even Considering taking an unlicensed medication for what for me is a long term recaltriant condition that may never resolve itself as I’ve had this for more than a decade and you would think by now I would be e reached some sort of acceptance.... however for me it’s worth considering a
shortish term (6/9 months) period of seeing whether this might work :-)
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