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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 Carlie on
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There are a lot of medications and poor diets that will cause hair loss to a degree that it looks like alopecia. That is probably the cause of your hair loss and had nothing to do with your immune system. Poor diet, combined with medications sounds more like the cause. My mother has started taking heart medication and her hair is falling out. She had more hair than most people half her age and now its very thin.
All of my hair fell out within 4 weeks, even my eyelashes and eyebrows. A biopsy revealed it was Alopecia. I went to numerous specialists, a functional doctor and a nutritionist. My functional Dr. made sure all my blood work was treated and balanced and the nutritionist put me on a strict diet. I totally believed that this would all work. I knew I would never be able to afford Xeljanz and I wanted to be healthy. I train and ride jumpers competitively, so my physical health is very important to me. I am 5'6 and typically weigh around 118. I quit all sugar, dairy, and gluten. I only drank filtered water at room temperature, no coffee, tea, alcohol, nada. I eat 4 small meals a day all included veggies, beans and protein. As boring as it was, even went on a cruise and stuck to the diet, I had promised myself I would try this for 1 year. After a year, I was still as bald as a billiard ball, not a single hair in sight and I looked anorexic. Most of the time I was an inactive member of this site and read all the stories. I finally sought out a dr. that would prescribe xeljanz and gave it a try. A year later I have a full head of hair. I eat all my favorite foods and often have a glass of wine in the evening. I don't know how I lived without coffee because I love it! Just saying, a malfunctioning immune system is like a runaway train and often leads to more than one autoimmune disease. It's very difficult to call of the attack but the medication block the it and prevents the damage. In the case of someone with Alopecia, the sooner you block that attack the sooner you minimize the damage.
One more thing, the fact your thyroid was good is even more of an indicator that you didn't have alopecia.
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Permalink Reply by Rascalx2 on
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Would love to know the main issue, wouldnt we all...maybe i had too many twinkees as a kid and it changed my body chemistry, sounds far fetched ..but does it?
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More and more research is being done on the microbiome. What people fail to realize is that plants the food we eat. Want to survive as well and develop self defence mechanism as well to ensure this. The effects of these wreak havoc on our gut microbiome. Isn’t it quite odd that our own immune system attacks our body? There has to be a cause. I was able to come off over a decade of pharmaceutical drug use by changing my diet and that is all that got changed.
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I would not be surprised. Healing of you GI tract is critical to health.
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I haven't posted in a while. It's been now 2 years and 4 months in Xeljanz out of which the last 2 years and 1 month continuously at 20 mg.
I do have spots that have grew over the last year (now they are a bit worse than in the latest photos taken in end of May). I am under the supervision of Dr. King.
Tried Minoxidil 5mg/day for 8 months and it didn't work.
Now I am going to try Minoxidil 10mg/day to see how it goes.
Also, I performed a small experiment on my scalp with topical Tofacitinib (1/3 of the spots as control and 2/3 as treatment) for 6 weeks twice per day and didn't seem to help.
I am attaching my progress over the years for anyone interested ( aw_may_2019_pdf.pdf )
Also, I have been dealing for quite a while with infections in the wisdom teeth (maybe this made my immune system more active and therefore more spots??, who knows?!).
The situation with the infections became too much. Both lower infected and painful. Decided to extract them.
Automatically stopped Xeljanz with no tapering. Booked an appointment to extract them with 7 days gap between the day I stopped and the day of the extractions.
Now it has been 5 days post extraction, so in total 12 days.
I have experienced very little thinning in one of my eyebrows and a bit in my chin.
I am planning to restart today or tomorrow.
I have experienced a lot of dry skin over the last couple of days - it could be because of the antibiotics I have been taking - again, who knows :-)
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Hello.
Thanks for posting. It’s heartening to read of your progress though the infections must have been very difficult to deal with. It’s good that you have Dr King monitoring your progress and must be reassuring for you. The problem I have in the UK is that I asked my GP to monitor my bloods and he has refused as Tofacitinib isn’t licensed for Alopecia.
I hope that in the not too distant future the use of the drug becomes available for Alopecia sufferers in the UK and a more deuterated version of the drug will become available that carries less associated risks. Good luck with your ongoing journey
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Thanks for the support ;-)
I have visited many doctors in my life both for alopecia and my thyroid - I have hashimoto.
By far, Dr. King is the best. He is compassionate, truly cares about his craft and has treated me as a person and not as another part of his job.
I believe that all doctors should be like that.
Find a dermatologist that works in autoimmune diseases and does research or an immunologist.
I live in the Netherlands, it took a while to find one and with a bit of luck and a bit of help from Dr. Harris from UMass, I have found a doctor that I can visit frequently with 0 intervention with my GP.
The bloodwork that is needed is very basic btw.
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Hi Mastros,
Great results man. Honestly if you didn’t tell someone they might not even notice the spots you have currently. Are you taking the branded or generic Xeljanz? If you are taking a generic does Dr. King have any thoughts on the efficacy of branded vs the generic version?
TS
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Thanks. Over the past couple of years I have worked on caring as little as possible about it. It's an ongoing process of course.
I am taking the original one from Pfizer. I have not discussed with Dr. King about the generic versions.
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Mastros,
I couldn't agree with you more. It seems like the more you think about it the worst it gets. At least in my case... I am also on the original medication from Pfizer although I was looking into the generic when I was considering taking longer term as my insurance does not cover it and it’s more than I would like to have to continue paying monthly. I have only been on the meds now for 4 month and my growth has been significant although not a 100% yet. I’m intrigued by everyone that has been on the drug for such a long duration and the results without any noticeable side effects.
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Fortunately, I can afford buying from Turkey the original one. A lot of people in the thread have been on the generic one and has been doing great.
2,5 years in the medication I would say that I haven't experienced some kind of side effect and I wish it stays the same. I am more cautious during the winter to avoid getting colds as much as I can. That's about it.
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I personally plan to stop after another 2 months and see what happens and likely wait until the more targeted second generation Jaks come to market. I recall Dr Christiano mentioning that getting on the meds before long duration of alopecia (>10yrs) was critical and would likely “reset” the clock buying us more time. I personally had alopecia arrays for 8yrs before taking the meds.
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