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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 Frrankie on
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Hay for those who are feeling fatigued. I know fatigue is a noted side effect but have you had your thyroid checked.
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Permalink Reply by Suzie on
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Definitely had my thyroid checked and all is well with it. When my hair was falling out I wanted to make sure nothing was wrong with me, so I had my thyroid checked, (and btw I wasn't feeling tired then at all). After several blood tests, etc. we determined my hair loss was due to AA and nothing else. I had experienced it as a teenager and no one ever knew what was wrong with me. It all grew back on its own and fortunately it was dormant for 30 years. I did develop RA in my late 20's after the birth of my 2nd child. And have had to be put on numerous medications for that.
After getting my hair cut my beautician noticed bald patches on the back of my head and said it looked like Alopecia. I had no idea what that was until I googled it. Then I had my "ah ha" moment....that is what I probably had as a teenager. For me I do believe Orencia had something to do with this episode. I was on it for approx. 6-9 months when I decided to go off of it because I was having some stomach issues and shortly after I got off of it is when the hair loss started.
My patches have all filled in nicely and I continue to take the Xeljanz for both my arthritis and hopefully that will keep the AA at a standstill as well.
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Glad to hear yo had it checked and you are ok. Sorry about the arthritis. I had undiagnosed hypothyroidism for about 10 years. Hypothyroidism destroyed everything. If I had only known. Everything is in check know. For about three years I was a different person. Until you know you don't know how important your thyroid is to you.
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Permalink Reply by ChrisPowers on
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I've had my thyroid checked many times. Although they tend not to do the most thorough of thyroid panels, the results always come back normal. I have TSH in the mid to high 1s (say, 1.7), Free T3 and Free T4 both in the low range of normal.
I did suspect my thyroid might be the source of my symptoms, but adding some T3 and a desiccated thyroid supplement has only been marginally effective at ameliorating those symptoms.
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I have been AU for about 15 years. Xeljanz caused the most growth of any treatment I tried, but it was still not cosmetically acceptable in my view.
I was on 5mg twice per day for over a year, but it stabilized with partial eyebrow growth (maybe 25% sparse), partial eyelashes (maybe 75% or so, but very thin, not dark, and not long like they once were), partial facial hair (maybe 80% mustache, 15% beard). My scalp hair refuses to grow almost entirely, although I had more random dark hairs than I've ever had since losing it, but that's still probably under 100 total.
I decided to try 10mg twice per day, and started either in January or February. I've been on that for three or four months, but I think four. It definitely accelerated things a little, but not enough to be worth the added risk in my opinion, not to mention the side-effects, assuming it is responsible for them. Part of my decision to go off is to figure that out, actually.
I'd say doubling the dose caused my eyelashes to fill in to almost 100%, but they remain light, short, and barely visible. From a distance, I may as well have nothing. My eyelashes still did not fill in to a cosmetically acceptable level, maybe 35% now, and sparse. I shave them. The biggest difference is probably in my facial hair. I have almost a complete mustache now, and maybe 30% of my beard hair.
Regardless, the overall impression is still quite abnormal, thus I did not feel it was worth the continued risk. When a treatment actually works, I expect that the results won't take years to manifest. At this rate, I won't have a full head of hair for 1000 years.
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Permalink Reply by Rascalx2 on
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Hey Chris, Im about equal to your progress. I m starting to come to terms with the fact that I am never gonna have the hair I once did. I feel the same that the risk is not worth the minimal reward. I am just a non responder to xeljanz and it sucks when I see people on here with full regrowth , Im happy for them but I was hoping for same results... I feel Im trying to hold on to the pathetic peach fuzz... at this rate it would take a 1000 years
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It is the Xelljanz causeing fatique it messes with you're.cells it's a choice you make when you take it this disease is devastating and will cause us to try anything. I personally stopped takeing it when I realized it wasn't going to restore my hair back to what it was. Even at a higher dose. There are no long term use of Xelljanz effects available and won't be for another 4 years. So I guess those of us that are takeing it are the long term subjects.
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There is a medication for glacoma that has a side effect of growing eyelashes. I think it starts with an L but not sure. Has anyone heard of it or tried it. I think it is an eye drop medication that increases presher in the eyeball.
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Hi Frankie it's called latisse or in the uk it is called Bimatoprost but should only be used applied on the area and not used in the eye. It can help but I think it's best if used with a jak inhibitor or something of that nature.
Kind regards
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