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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 Newjack on
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That's exactly the route I'm going because my insurance denied me, twice. I fear xelsource will give me issues simply because the detail the denial letter goes into. I am wondering if anyone has experience with this.
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They have covered many. I'm just worried about how my denial letter has been worded.
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No, the process so far has been
1. Preauth denied
2. Written appeal denied
3. Xelsource route.
Xelsource is becoming a headache though only because I am unsure if it's because the insurance isn't sending the correct documents to the doctor, or if the office is losing my stuff.
Xelsource requires the letter that says I have been denied from the doctor.
It's not easy and I'm becoming jaded.
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Are you using a doctor that knows what their doing? I finally have a doctor after 18 mos. that knows all about xeljanz, insurance appeals, and everything else one needs to get this covered. She did say that if we didn't succeed, I might lose my hair again after three months, that is, if I'm a responder. She did tell me she's never had to work with medicare.
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Absolutely, my doctor is great. I just think the office is super busy and I'm very impatient. I have all the documents I need to send over, just am unsure if I should do it and wait for the doctor. I have about a month and a half left before my copay card runs out.
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It really is an incredibly frustrating process not made any easier by what you're going through. If you haven't already, talk to your doc (who I think you said is my doc) about appealing to NYS. They reversed my insurance company's two denials.
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I just called pfizer to inquire about the hardship assistance program. I mentioned that I'm taking it for Alopecia and the next thing I knew I had someone from their drug safety division asking me questions about myself the numbers on the bottle, my doctor, my health records and on and on. I asked why they were asking me so many questions and they told me because I am using it for Alopecia and it's not for supposed to be used for Alopecia. They kept referring to my concerns and I said there were no concerns and that's not the reason I called. Now I'm worried, has anyone else had this happen?
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- Hi guys- just a quick question- are any of you guys who are taking xeljanz on thyroid meds? It looks like I might have to add T3 following some thyroid bloods and I'm just wondering how it will interact with the Tofacitinib. It's hard to really find answers because tofa is a relatively new med and I can't (and my doc can't) seem to find much info on the use together. I really don't wanna go back to my endo who was absolutely hopeless. My gp seems to think it will be ok but after getting so far with my regrowth I'm petrified of doing anything that might jeopardise my progress. So any experiences anyone is willing to share would be gratefully received. For reference - I have hashimotos- until now I've managed with no meds, but just been tired and feeling blah and my thyroid results indicate it ****may**** be the issue (not optimal levels but still in range is what my doc said)....
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I take armor thyroid which is natural (made from pigs thyroid closest to humans)it is a T3 and T4.Only medication that made me feel good. And yes I took it with xeljanz and I was fine.
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Thanks football fan,
armour, I think, maybe hard to get in australia.!im thinking of trying to go T3 only based on a bit of research (wonder if my gp will think that's ok) but then there are some great stories online re hair growth and then some sheddding stories.... I get scared of anything that has a hint of shedding as a side effect as I feel I'm already fighting a battle on the hair front and really don't want to lose any of my gains.... but I am feeling pretty worn out and I think the thyroid is the cause.
Ahhh my auto-immune system is really annoying me....
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