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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 Lori on
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I have a question for everyone! I've been on Zeljanz for a month 10mg and this week my hair has fallen out a lot. I have that burning feeling that never ends and woke up with big lost patch over my leftear and neckline. Has this happened to anyone? Do I still take the Zeljanz? It's obviously not working. Any replies would help me at this moment. My daughter is getting married in 6 days wondering if it's the internal stress that triggered it!!
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Permalink Reply by Jckah on
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You're roughly where I'm at. Depending on the person, it can take a few months to calm the immune system. It seems like others are responding quicker because they were pursuing other treatments before Xeljanz, and it just gave them the extra push they needed. I had some kind of flare up the other day, but the shedding seems to have stopped and whatever I lost is already filling in. I say continue with the Xeljanz, get through 3 months, give it a chance to really calm your immune system and decide from there. Just don't get discouraged, this involves a lot of faith and patience.
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Thank you for your support incouragement! I have all good things happening in my life right now. I wish this would just stop!! Thanks I will keep taking it!!
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Hi Same here thought the shedding would stop in a few weeks.Almost at 4 months on xeljanz now and lost about half the hair I had when I started.I think it finally stopped would like to see some growth now.Going to keep on it till the end of the year . When I started I was in a shedding stage so maybe it took that long to stop.
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Does this happen to everyone or just a few? I always read everyone's posts they said it started to grow back in 2 months. Getter by nervous!
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Permalink Reply by Steve on
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Hi, I am looking for some info before I go to my doctor. Has anybody in the UK had any prescription given to them that wasn't an ointment or cream? I have AT.
Also, with the people in the UK that are going to Turkey etc for Xeljanz, are you taking this without doctor monitorisation?
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My doctor in Italy told me to think well before you go to buy
xeljanz turkey because it has many problems, so I will not have his help but I'll have to do everything myself,
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Yes am taking this meds without any medical monitoring
I plan to see my nurse and doctor after two weeks of being on the medication
You can follow me on Facebook DealingwithFacebook
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For those with Vitiligo
Hi Guys
Just letting you know I have gotten hold of Xeljanz and am using it base on this article I came across in June.
You can follow my journey by requesting to be added on Facebook Search for DealingwithVitiligo
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Permalink Reply by DJ88 on
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Hey guys,
I haven't posted here in awhile. I have a few questions.
So the clinical trial results are in October. How soon do you guys think Xenjanz could be approved if they get positive results?
and do you guys think the results from the trial will be good enough? Dr. King seems to have faith in this from what i read.
Lastly, whats this about a hardship card and making under 90k? Is it something I can use forever or is it a limited time and how much does it cover Xenjanz's cost?
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The hardship is different from the copay card. It's a one time shot for 10k of support or about 3 motnhs or so. The copay card I believe you can apply for oncea calendar year but the hardship you can only get once in your lifetime (?) pretty sure this is right. If you google xelsource you can read about it.
If you are in a one person household and make less than 75k, and are a US citizen you can fill out forms and should be able to get the hardship. If you have more than one person in your household and your combined income doesn't exceed 90k you should be able to get the hardship. If you don't fall into these categories you have to appeal and fax in your monthly expenses to show you cannot afford the meds. They decide whether or not you can get it. I'm waiting to hear back.. honestly I don't know how anyone could really afford paying 25k plus for meds but who knows. Hope that helps.
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