Alopecia World
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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 nzahir on
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Anyone on here apply for the Pfizer Assistance Program for this year?
I believe it is under 5x of the FPL
Anyone know if this number is accurate and if the income is gross/net?
I am basically at that level, but I will be much higher the next year and I am worried there (but I think I have a way around it)
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I am not sure I understand Pfizer's "income limits" for assistance. If a monthly cost for Xeljanz is a little more than 1/2 my monthly income (I am talking about the full cost without Pfizer assistance), why would I spend that much (more than 1/2 my net income a month) on a drug that may not even work? Also, does Pfizer refund my money if their drug does not work? If they wish to be part of the free market system, shouldn't they play by the rules (i.e., customer satisfaction guaranteed)? Is there a good possibility that Xeljanz will be taken off the market in view of all the lawsuits being filed concerning it?
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Hi everyone, Just want to know does anyone take tofacitinib with baricitinib or is this not possible?
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Hello friends
i need urgent supply of Xeljanz. Can you advice of trusted source ? Cheap price and genuine
thank you guys
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Beacon as mentioned in other threads is a potential source that people have been using.
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Hello,
Again, it's been a while since I last time posted. I have been having health issues for last year or so. First a lot of teeth issues, then polyneuropathy that took 7 months to 90% recovery after pfizer's covid vaccination and lately esophagitis after covid infection. Examples of my immune system attacking itself.
In all this past year, I have stopped Xeljanz 3 times of around 5 days each time for different reasons. I have been in 20mg daily, and also taking Minoxidil 10mg every day. Tried to taper and reduce to 15mg Xeljanz for 2/3 days a week for a 3 months or so consistently, then went back to 20mg because I had a few small spots here and there.
You can find attached my progress over the last 5 years which I have been taking Xeljanz.
I wish it helps people with Alopecia Areata that there is hope and give one more data point that medication can help in certain cases.
I am really grateful about the forum, since it really helped me find out about Xeljanz, and over the years has given me support and inspiration.
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aw_mar_2022.pdf, 5.3 MB
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Hi, I am a long-timer on this site, one of the originals, I think beginning in 2014 with ADML, the originator of this post. it's been a while since I have posted, but I was wondering two things: first, has anyone experienced a relapse since having Covid? I have had complete recovery for the last six years, but am experiencing major hair loss again since having a very bad case of Covid? Second, I have been lucky so far and my insurance has covered Xeljanz, however, I don't think they are going to approve this time. I am going to have to order from Beacon and was wondering if anyone could walk me through the process. Is Transferwise still being used? I read on another site that it was not being accepted anymore. Thanks for any help or advice anyone can give; it would truly be appreciated. This condition is so frustrating!
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Hi starshine also a long-timer on this site.I send an e-mail to mouree@beaconmedicare.com.bd I tell them what strength and quantity(usually 25 boxes of 11mg) I want. I live in California and send my email on Sunday night around 9pm and always get a response pretty quickly. They will send you out instructions.I go to the bank to send my wire transfer and it takes about a week to go through.I then send out another email making sure they received the money and will get a picture of the box with the tracking number.It usually takes about 8 to 10 days to receive your package I like to check every few days to see where it is.I read that we might get an approved medication this year.Keeping my fingers crossed.Good Luck
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Hi Football Fan, I definitely reme.ber you. How are you? Did Xeljanz help you get some hair back? That is so exciting that we may actually get our own drug! How does the bank transfer work? I am so new to all of this. What info do you have to give them. You can message me if it is easier. I really appreciate your help. I am actually a little scared to do this, but have no choice now. Do you pay in US dollars? How much is it for the amount you get? Thanks so much, Football Fan. I wonder what happened to ADML.
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Hi starshine I did not get all my hair back but still taking the medication because I don’t want to lose what I have.You will get all the information from Mouree to take to the bank I print it out and they know what to do.I go to Chase they do charge a fee but I know it’s done right.It cost me $790. For 25 boxes of the 11mg including transfer fee.
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Thank you, Football Fan. I will do just that. I am sorry you did not get all your hair back, but, hopefully if a new drug comes out just for us, it might work better for you. Fingers crossed.
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Hi starshine,
I also haven’t posted in quite some time but I used to be very active on here a few years back. I have been on and off xeljanz over the years due to pregnancies. Currently off of it and got Covid back in December for the second time. Had mild to moderate hair loss I’d say about ten spots. My dermatologist said this is extremely common post Covid even if still on xeljanz. It should slow down after about 4-6 weeks and growth should resume
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