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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 Frida Rupert on
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It can take some time, some people respond really fast and others it can take ages. I just try to remind people that slow response doesn’t necessarily mean you won’t respond well. I was 5 months before I responded at all and got it all back so try not to stress if it’s slow. Taking co therapies like minoxidil (oral and/or topical)and steroid pulsing can speed it up but if you are seeing response I’d hold on for another few months before adding anything. Some people advocate diet changes- I think maybe if there is an intolerance but with severe cases I think diet only makes a very very small impact. Personally I take biotin and vitamin d (because I struggle to stay in normal range) and iron as dictated by blood results. Generally just being kind to your body- no crazy diet restrictions but healthy, exercise if it soothes you, meditation etc, these help the journey a little as the anxiety that comes with alopecia can be full on.
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Hey Brock,
I work in a corp environment too at a start up. It was super difficult at my worst. I don't see myself ever leaving this world unless I get a remote job .
How were your coworkers? My boss was not sensitive to the situation at all, but after I had a discussion with him I think he understood. Now that I'm on xeljanz, I try not to stress but thinking about bow I may deal with this again in a corp environment does stress me out... Especially if I decide to leave and go somewhere else.
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I shaved my head down and of course I got tons of questions. I did it around the time the super bowl happened and I just told people jokingly I lost a bet. I work for a huge corporate (2000+) people and I’ve been there over 15 years so people know me. I also have to do presentations in front of large groups of people.
Im on Xeljanz now and have had complete regrowth since. I sometimes forget how bad it was only a month ago. I kept shaving until all of my spots filled in. I came to the realization that the shaved bald look may just be my look for the rest of my life and I have to just face reality. It sucks... it sucks really bad... but it’s out of my hands and besides taking medication there really isn’t much I can do.
i feel better on Xeljanz though. I know a lot of people have side effects but for me it’s done wonders for me outside of growing my hair. I think stress plays a part but I also think that its a lot of other factors too. I am high allergic to lots of things and Xeljanz and has helped with that too.
Will I be bummed if all of my hair falls out again?... of course!! But I’ve shaved my head and know what to expect now. It was the best decision I made even if you can sort of see the spots even when I shaved it all the way down.
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Permalink Reply by Rascalx2 on
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As long as i have eyebrows and facial hair i can deal w bald head. Sometimes i think how to get xeljanz mg just right so head is smooth but keep brows and facials hair. For me the most difficult was the feeling of losing my identity, the no hair on face was for the hardest.. i just started a new career two months before i lost everything. Most people i worked w only knew me as bald, so my friends and family knew how bad i was struggling and despair j was in, but at work i just was able to fake it ... looking back it was so painful at times the whole experience...., anyone get shingles vacination? Doctor suggested i get one because im in xeljanz
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Permalink Reply by Keithm15 on
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Keep your head up. I know that stress and anxiety all too well. It’s a viscous cycle of ups & downs.
I’ve been there and shaved it all off. Funny thing is, afterwards you do feel a bit of freedom. 2 years on Xeljanz, and doing well. Still spots here and there, but I’m thankful.
I will say, with Xeljanz and going gluten free, the growth was RAPID. I suggest cleaning up your diet as well. It’s all connected in the gut.. It gets better!
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Where do you guys store your medication by the way?
Is the fridge fine? That is what I have been doing
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The Xeljanz box from Pfizer India said under 30 degrees C, but gave no specifications. Do you think the compounds can be different or they tell them to keep it a very cool area because of their warmer weather?
I hope I have not been ruining the efficacy the last few months, but I have no clue who to ask.
I received Xeljanz from US pharmacy the other day and the labels are different in terms of storage
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I’m the same as Kevin, in a cupboard. My stock has been through all sorts of temps and still is effective so try not to stress too much about storage.
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I am just a bit nervous since the packing instructions from Xeljanz from India pharmacy is different than the US one I got direct from Pfizer. So it has kept its efficacy for you right? Just was hoping I haven't been wasting last 3 months on a medication hat has done nothing
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Hi - I live in an area that gets super hot in summer and kind of cold in winter (no snow- but definite chilly weather). Mine is in my kitchen in a cupboard and has been through hot and cold and is still effective. I think they put general guides on the meds but they are very conservative and I honestly don’t think it matters as long as you’re not cooking it or freezing it (actually freezing might even be ok as that seems to preserve everything...lol). I have used Pfizer from India and Australia and the generics. Both retained their potency (well I think as my hair is back and going well).
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hi frida are you better your fall is stopped?
I'm better I was very stressed
I am doing a solumedrol cure 500mg intravenously 3 days
consecutive month for 3 months.
I still have no complete regrowth it is difficult because I have the alopecia since my childhood I wanted to use baricitinib but there is a user who went from jakavi to Baricitinib is to see his hair fall while jakavi and baricitinib are inhibitors jak 1 and 2 and xelanz 1 and 3.
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