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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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Replies to This Discussion
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Permalink Reply by Shad on
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Carlie i just started 1200 mg in a month + 10 mg xeljanz
Katrina congrats you look awesome!! U were the first person that I saw your picture s and started with hope.
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Permalink Reply by Rascalx2 on
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I doubt shampoo has has as much effect on alopecia as is being discussed, i think it is just the auto immune disease doing what an auto immune disease does.. I read people putting alot into their diet and effects of or not effects on alopecia,.. i did the auto immune protocol diet for a year and did not grow a single hair,. I think it is important to eat a healthy diet but i dont think having gluten in my meals or nightshades makes any difference in growing hair , losing hair, thicker hair. I see biotin is positive with xeljanz, but this damn alopecia effects everyone differently and may progress or may slow down . Wish it was as easy as using a brand if shampoo
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Totally agree Rascalx2. I think diet, supplements and shampoo are helpful for that 5% extra growth.... eating a healthy diet may help offset a bit of the potential damage of the meds, vitamins like biotin, vitamin d, iron turmeric may give a bit of a boost to thickness and sped of regrowth but on their own I don’t think they are enough to overcome AT or AU.... I use foligain alternated with neem shampoo - the neem helps a bit with acne etc but doubt they impact very much on regrowth. Basically i think reducing inflammation overall helps a bit.., but this is an autoimmune problem, and reasonably aggressive to get to Au and AT... I tried various autoimmune protocols, keto, paleo, whole 30- felt very healthy but regrowth did not happen until I got on the right dose of xeljanz, and steriod pulsed to get it started...
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I'm on keto now, and was keto for 2 years when alopecia started. I stopped keto when I saw AA for the first time because I thought maybe that was the issue. Nope within 3 months I had spots everywhere. And shaved everything and was slowly becoming AU then saw patches on my leg and I was going AT. Xeljanz filled in everything from head to the patches on my leg and even grew hair in spots on my body I never had.
I still have inflammation, I feel it. But I think I react to the drug so well that I think any set backs if they should happen can be adjusted.
I'm always going to be scared. But I truly believe that we will have something soon or at least easily accessible.
The anxiety and depression this disease causes for most is absolutely crippling, hair or not.
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Wow Katrina you look amazing ! Was feeling quite depressed this morning until I seen this which gives abit of inspiration.
Can i ask was you Au? Because it seems like your AA as on your first pic you have some growth on your head ? Or was that growth from taking xeljanz for a few months first ?
Thank you.
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That first pic was as my hair was falling out. I ended up shaving those last few bits off.
i was AU (no scalp, facial or body hair) from August 2016 - around December 2016 when the Xeljanz kicked in
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Did you use the pulse prednisone and if so, how much? Thank you for not deserting us!
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Thank you for clearing that up Katrina and keeping everyone updated.
Again gives abit of hope to people who want to try xeljanz .
Kind regards
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I've been on xeljanz since April for Psoriatic Arthritis. I have also been suffering from Alopecia Areata for about a decade. 33 yr old female. The Xeljanz is very muxh helping hair regrowth. My next derm appt is in August but at last check in late May derm said i was showing 3 mos growth in some areas though i had only been on Xeljanz for around 7 weeks. Significant improvement since then, I would say I am at 80% regrowth. However, it is not strong enough for the arthritis and will be requesting supplementary medication to deal with that (I am expecting them to suggest Methotrexate). Anyhow, since starting Xeljanz I have been blessed with a couple styes, both after mellowing out developed into small chalazions which I have shrunk from diligent use of warm compresses. Anyone else having this issue?
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I should also add that I have taken a short heavy dose to taper of prednisone acquired while destination wedding vacationing in Mexico where it is available over the counter (April 4th thru the 20th is when I took it). I also have in the last three days been on 20 mgs of prednisone from a leftover script to combat arthritis so I can walk without being in pain. Doc suggested at last appt steroid injections to scalp but felt it was too early. In August I will agree to target stubborn areas with the injections and update after there is a window for improvement. I would post pictures but scalp psoriasis is severe and didn't take before photos. Will post after photos when desired level is reached. At the worst I had maybe 30% of my hair, and I'm probably being generous.
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That’s great about the hair growth- though I’m sorry you are still having problems with psoriasis and arthritis. Hopefully the xeljanz will help those a bit too. Keep us updated of your journey- i found this thread so helpful in finding and tweaking my treatment - all the info helps people who are looking for info on the what/how/where’s. So glad its giving you improvement!
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