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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 AlopeciaDestroyedMyLife on
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no not yet
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Permalink Reply by DJ88 on
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The dots, is that the black hairs or is that from the tattoo? and how is the facial hair coming along?
( eyebrows/lash/mustache etc)
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Permalink Reply by Imran on
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That's where I got confused too, the dots. But I see a lot of velus hair. Xeljanz does look promising.
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The dots are the tattoo.
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Permalink Reply by aaron on
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Woah, nice progress. Makes me anxious to see the trial results this summer. Glad that xeljaz has worked for those willing to pay.
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Hello everyone,
It has been 2 or 3 months since my last update...I apologize as I have been going through some family issues. I hope everyone is well...because we all deserve to be. My progress continues to be positive. For a couple of weeks I thought things may have stalled but then I noticed significant hair growth on my chest. Here are a list of improvements:
- Most all of my eyebrows are back as thick terminal hair...I love it!
- I believe most of my eyelashes are back and they are also terminal.
- 98% of my mustache is back and thick terminal
- My head has thick vellus with some hair turning terminal...not much yet but starting.
- I have more nose hair
- I have patches of terminal hair on my chest (my chest has some significant growth starting) and some on my arms. Arms also have quite a bit more vellus.
- my groin is also starting to get some mixed terminal/ vellus growth.
- My beard is a weird area...have some terminal growing and a fair amount of thick vellus but also have my entire neck area with no growth yet of any kind.
- No hair on my legs at all yet.
- bottom-line...there is continued growth but is comes is strange waves. If I get my facial hair back I will be happy!
I think the real benefit to all this is that it puts substance behind the theory introduced in 2010 on how this disease works. Now that there is some confirmation to the proposed science I hope to see more economical solutions to this autoimmune condition (or at least something that everyone can get thru insurance). They just might have this thing beat in the next 5-10 years. I am seeing more folks trying this drug out and I applaud your efforts...the more attention we can bring to this the better.
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What a great post to end the day. I'm so excited for you and your progress. I don't share any of this news yet with my son who is 12 because I don't want to get his hopes up. Before the disease hit he was already very shy and didn't speak, and along with some other family problems he has really become introverted. Thank you for the update. Is anyone going to the national conference in California later in the year ?
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Your son has a great dad. I think you are doing the right thing by not sharing this news yet. At his age aggressive treatments are not recommended. However, this whole thing does continue to spring hope and that is something we all need to have fueled sometimes. I have 2 children myself and I am hoping that this disease skips a generation with the mindset that they will certainly have a cure should my children's children get it. Be there to support him and he will appreciate it in the long-run...even if it doesn't seem like it in the short-run. It really is beyond belief that they have not made more progress with this disease over the last 20 years. However, with the new information within the last 5 years and the speed of technology like it is, I am very optimistic for all of us over the next 10 years. I am hoping some floodgates have opened and new approaches are being taken now that so much more is known. You can also google "turn off autoimmune" and see some of the research they are starting with slicing the problematic protein and injecting it to desensitize the body to it...I think this could be real interesting. And thanks to the 2010 study, we know the problematic protein for alopecia!
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