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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 okan94 on
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Kevin thanks for your reply.In some areas it started to grows in my beards.But not thick.I did not observe hair growth in areas other than face region.I do not speak french.I live in turkey :)
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Hi Okan, like Kevin said you could try a trial of steriod pulsing for a few months. Other supplements for hair, like a dht blocker may also help a little. Personally I take Allegra and use minoxidil daily. I also take a high strength vitamin d supplement as there is a bit of literature out there linking vitamin d deficiency with immune disorders. I also take a strong turmeric supplement (anti inflammatory) and LDN - that for me is more for my hashimotos though. Also I use careprost/lumigan/lattisse on my brows and lashes and that has helped enormously with thickness and length. The immunologist said the other day he thought they were false lashes cause they were so long! They were long before Alopecia and now they have returned to what they were.
Its hard though as everything is so individual- some people get full regrowth on 10 mgs a day - some need up to 60 mgs (and that’s just from this forum). Some people find steriods helpful while others can’t tolerate them.
Your hair air is actually looking very good- so encouraging! And like Kevin said - unfortunately everything with hair is a waiting game. Most “good” hair growth products actually say you need to give the treatment between 3 - 6 months to see results as that’s a reflection of the hair growth cycle.
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Frida thanks for your reply.Using minoxidil for 6 months did not work very well.I purchased the Ldn but I'm afraid to use it with Xeljanz.Should I use steroids orally or I have it made cortisone injections for skin ?
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Well, it depends - I think oral steriods work better for generalised results but some people really struggle with side efffects on oral steriods while others feel great on them. My xperience is that oral steriods pulsed - which means high doses of strong steriods two consecutive days a week for a period of time- works very well with xeljanz in my case. Other people find they get so agitated, gain weight, get insomnia and decide it’s not worth it. The one thing with steriods is that oral steriods cannot be taken indefinitely... you do need to come off them, studies seem to indicate that xeljanz helps keep the hair grown on steriods even when weaned off them and to date this is my experience. If your hair really thickens up on a higher dose of xeljanz you could probably get away with steriod shots for specific areas. Also the careprost is very good at lengthening and thickening eyebrows and lashes. On the other hand steriods are universally cheap so depending on financial circumstance perhaps steriods are more doable.
Also LDN is reasonably safe- a couple people on here use it with xeljanz with little interaction. Of course there are risks with it, just like with everything. I think taking biotin is a smart move and you are doing that- I take 10000mcg a day and I think the quality of the regrowth is better for it. I don’t know if it’s my supplements, the fact it’s all grown from one length, totally free of styling product or chemical treatments but it is, i think, a bit thicker then pre-Alopecia days, the colour is a tad lighter and it’s come in with a bit of curl (this could be that this is the first time I’ve had short hair and don’t have the length to make it lay straight). Whatever happens I think at least 12 months should be the minimum time to trial xeljanz- growing hair is a slow process in people without Alopecia, with us it can be even slower as the body is fighting it. I think your progress is really great, you are responding which is wonderful, and really I think all that’s needed is to increase the dose or do a steriod pulse( - on steriods it’s doubly important to do blood tests to ensure your major organs are coping).
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I'm 24 years old.This is my photo 12 years ago.I want my old hair back :) I started to use xeljanz 10 mg for the first 2 months.I used 20 mg of for the next 2 months.I did not see a difference between 10 mg and 20 mg.So I reduced it to 10 mg again.When I talked to the doctor, he told me should don't use cortisone with xeljanz.But I will take all the risks and start using it in cortisone.How many mg I use Cortisone a day.For example,dexamethazone.
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Permalink Reply by Mashloum on
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You need to be patient for the medication until response
I would suggest repeat the lab test to check cholesterol and give chance for Xeljanz dousage for 3-6 month and the decide for next step
the hair cycle between this range of response period
i will pray from my heart to get your hair back, since I am father and I can feel the pain for this matter with my son
keep your self positive and do not expedite
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Hi Okan and Kevin, Okan, you did have lovely hair. I know this is hard, we so desperately want to be ourselves again - I’m very lucky in my response ( and grateful) but I still miss my long hair and my carefree attitude to hair from pre- Alopecia - I kindof agree with Mashloum that you probably needed a bit longer on the 20 mg. I’ve attached a PDF of an article on steriod use in Alopecia. Unfortunately it is in English so if that’s not your first language it maybe diffficult to read though there is a graph which is reasonably easy to interpret. This study is freely available on google so I don’t think I am at risk of breaking copyright by including it. Regardless I encourage you guys to save the PDF because I’ll leave the attachment up for a few days and then delete in case there is an issue with copyright.
The article refers to use of steriods WITHOUT xeljanz so the percentages are actually not bad. For example one study had response to betamethasone at .01 mg per kg body weight at 80%- good or excellent response. I personally wouldn’t do it without doctors knowledge and/or supervision. While pulsing I had fortnightly blood tests ( up from monthly when on xeljanz alone). My difference came 3 months after increasing my xeljanz dose so I think you may need to be on 20 mgs for longer then 2 months as hair growth cycle is between 5 mg and 10 mg. My dose was 5 mg of betamethasone 2 consecutive days a week. My side effects were a bit of weight gain and some problems getting to sleep on the pulsing days - so two nights - otherwise I felt good. When you come off you must wean off. I went down 1 mg per day per week for approximately 5 weeks. I was pulsing for 3-4 months including the weaning. Please be cautious and be vigilant with blood tests if you use steriods - your organs need to be healthy to enjoy your new regrown hair!
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thank you frida. I started today 5mg 2 times a week. I had already been on prednisone 35 mg daily associated with methotrexate for one year 70% coverage. side effect swelling weight gain. I am followed by my doctor I make analyzes they are good. I can not go beyond 10mg I pay myself xeljanz and I tried 15 mg I have constipation and stomach discomfort so I stay at 10mg so far it grows well but can be adding betamethasone it will boost growth.
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hello frida is the dose of 5mg betamethasone two consecutive days per week? my doctor put this dose on.
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Hi Kevin,
yes that was the route I took. The study attached above has a graph which looks at studies that used all types of steriods and different dosing regimes. It is very informative.
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Permalink Reply by Rascalx2 on
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Anybody grow hair on xeljanz then lose it all again? I was AU grew it back and it is falling out rapidly... went to derm and got kenalog injection week ago but shedding lihas progressed andlooking at back of head has bald spots all over ... went back up to 20 mgs because i went down to 15 mgs and that is gonna take few weeks to set in .. this sucks!
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