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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 TC on
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If you had seb derm on your face, it's likely that you also have it on your scalp. It's mild, so no big deal, and easily kept under control.
I just backed up on the thread to try to find one of your older pics and noticed you mentioned something about a general burning feeling on your scalp about 2 weeks ago?
p.s. I still think you're werwolf hairy dude :)
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Hey,
Yeah I did have burning but it stopped almost 2 weeks ago to do the day. Don't know why (was studying like crazy and tapered the antibiotics )
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Hey,
Minocycline would have reduced the burning sensation, so that would line up. But it's pretty harsh on the system (like dropping a nuclear bomb) so not sustainable long term.
Seb derm (SD) becomes more difficult to manage when on immune suppressants so this may benefit a lot of us here. I use Nizoral regularly. Never had SD before Xeljanz.
Some research articles I'd saved on SD if you're into stats....
Topical application of ketoconazole stimulates hair growth in C3H/H...
Pubmed - Nudging hair shedding by antidandruff shampoos. A comparis...
You can also use Nizoral on your face to keep your seb derm controlled. Just use the excess lather from your hair on your face and rinse off after 2-3 mins while in shower.
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Hi TC- great info - I’ve never had issues with Seb dermatitis but now do suffer from what I thought was acne but now realise it is probably Seb dermatitis - on the skin on my face and scalp - the over the counter anti acne wash and cream and a low dose retin A clears it up on my face but struggle on my scalp and I do notice when it flares my shed picks up. One thing that really helped the scalp for me was a high dose specialist minoxidil topical which had additional additive which included low dose retin A and azaelic acid as well as minoxidil - it seemed to help a lot with the scalp inflammation but I went back to chemist stuff after I kept forgetting to reorder (it takes few weeks to arrive here in Australia). Retin A and azaelic acid would probably help the Seb dermatitis too as they are good at controlling oil and bacteria. I have noticed the spots/inflammation kicks up when I am stressed - this make sense as my immune system is probably compromised slightly more during these times - currently having a bit of a flare as we are having some massive forest fires around where I live - we’re fine - very lucky - but the constant smoke and risk is wearing thin and I’ve noticed in previous periods of stress this has happened too. I have reordered my specialist minoxidil and it will be interesting to see if it helps. So Newjack I do really feel TC is on to something. Unless there are really clear patches and no visible dermatitis (even redness) i would think this is the more likely cause, as you are such a good responder at the onset...
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Hi Frida - Happy New year with lots of healthy shiny hair!
Your discovery with the compounded minox with retin A and azaelic acid is very interesting.
I think Nizoral is a pretty simple but effective treatment to control seb derm and related shedding and well anything that can potentially increase growth, and diameter is a bonus.
Newjack has a thick healthy head of hair, and I don't blame him for wanting to hang onto it. Sometimes it's just a simple thing like SD, but like you said we all have PTSD from this, so it's easy to jump to the worst conclusions.
Let's hope 2020 is a healthy year for all of us! :)
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So I am seeing some regrowth finally in my scalp after going to 20MG from 10MG.
For 8 months I literally had basically 0 growth on my scalp (just on eyelashes and little eyebrows), now in 2 months I am seeing hair growing in multiple different areas on my scalp and other areas, so it seemed like I needed more since my JAK levels are probably high
How do you guys (males) cover your scalp when you are/were regrowing hair? Or did you just go around all the time with patchy hair.
I guess just wear hats when I go out, but kind of annoying.
I am seeing my derm in like 5 weeks and want to ask if there is a chance we can shave my head until it starts to grow back all together, but I don't think that will be her advice
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Permalink Reply by Rascalx2 on
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I was happy to be getting hair back, it comes back quick when it starts coming in, i worked so hard and stayed patient, i was not gonna shave off the little i had, i was just happy i didnt look like a chemo patient having no brows or eyelashes, i feel that when i wore a hat with no hair , i just looked worse, keep your chin up and look the world in the face you have nothing to ashamed of and you will have more hair soon
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