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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 mastros on
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https://www.webmd.com/drugs/2/drug-8680/minoxidil-oral/details check the side effects section
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Hi guys
I've been trying order from BeaconPharma for over a week to try the Tofacinix 11 mg for my AU condition. I've gotten the initial email asking for information on quantity and mailing address, but after i send the reply email i don't hear anything back from them. This has happened twice. Is this normal? I have sent emails to the addresses provided on these forums and i even put in a order on their website and i still don't hear anything back. Am i doing something wrong? Are they against shipping to the U.S.? Any recommendations will be helpful at this point. Thanks!
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How many boxes did you order? Looks like they are interested in more than 20 boxes shipments.
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Poput,
I ordered 25 boxes at the beginning of April and it took under 2 weeks to arrive at my home. I ordered 25 boxes and had zero problems getting it. I hope this helps. I have been on Beacon since April 11, but no new growth yet. Apparently, it is too soon to expect much as most people don't start seeing growth until 2-3 months as it takes time for the drug to build up in your blood stream. Wishing you best of luck. I live in the U.S.
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Three years ago was when my alopecia started and eevery year I been hoping xeljanz will become the standard drug for it. Why is it taking so long? When should we expect it to be the drug naturally and insurance accepted drug? Thanks
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Permalink Reply by Maurice on
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Wonderful thread, very nice to see that some people AU like myself have recovered using this miracle drug. As far as my understanding goes, no research has been done yet in the long term use of this drug. And apparently it is only for AU.
Then there is minoxidil, I heard that a lot of people use this drug to enhance the effect of tofacitinib. But apparently minoxidil in itself does not do much for AU, right?
I am a 24 M, living in the Netherlands. Are there any other dutch or europeans here who are AU and have recovered? I have been AU for almost 10 years. As of late I have been looking into getting treatment, with not much expectation. But it would be a shame to not try any treatments.
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hello frida I lost a lot of eyebrows for 1 month. I shoot and it comes off, it's the only part of my body where the hair comes off pulling on it I'm really, I noticed it's since the stop of the batametasone.
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How long ago did you stop the betamethasone Kevin? It could be that or it could be a weird cycle thing. My recent shed, I think, was a sort of cycle correction- it was only my scalp and the hair grew in almost as soon as it shed. Are you seeing thinning or is it just you are noticing the hair once it’s fallen? If there has been stress recently it could be a response to that and growth will resume again in a month or so. You could try to pulse the betamethasone again but it’s only short term so hopefully it’s just added stress or a cycle issue that will resolve. Can you remind me what dose you are on and if you have started baricitinib yet. If you have moved to baricitinib it could be that for you Tofacitinib is better than baricitinib, or if you are on 15 mgs you could try bumping the dose up to 20 mgs for awhile. Also have you switched recently from Pfizer to beacon as even if the dose is the same the different fillers may impact on absorption. Try not to worry to much yet as it could be something that cycles back to normal in a short period.
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thank you frida yes I have a thinning eyebrows, I stopped the batametasone there are two me, and I had reduced xeljanz to 15mg and 10mg.
actually I had a great time stress anxiety attack for fear of having a pulmonary embolism but all the exams were done and all is well, I went to beacon 1 month ago but it started fell 1 month before I take beacon my friends is under tofacinix for 4 months and she the 60% of hair cover with 13mg of tofacinix she takes 3 because it is 4.2 mg instead of 5mg the standard xeljanz.
I went to see a dermatologist a pioneer in the inhibitor jak he told me that we must continue the drug in the long term so that the body resumes its normal rhythm so that it is not relapse the immune system could get used because a short period is not enough is the relapse would come back for most of us,
next week he me but infusion of 500 mg of cortisone for 3 days a month for 3 months he explained to me that it could boost the regrowth and in terms of side effect it will be zero because the short term will have no impact on the body. I go back to 20mg of tofacinix but despite all I find new repousse on the scalp and legs.
the doctor told me in terms of safety he is more sure than any other treatment
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Thinking about to make a trip to Miami.I live in Turkey and can get some Xeljanz with me.I have alopecia Universalis too.If some people need those pm me but most important thing is i would like to give the boxes face to face not by shipping.
Regards all
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Hi guys,
im just in the process of booking in for a minor surgery (hernia) and was wondering if anyone else has had surgery and how their body has coped with it. While I am not overly concerned the obvious things that worry me are going under a GA, including heightened risk of blood clots, causing a flare, and infection post surgery. I’ve read up- doctors don’t seem overly worried- stop meds a week out they say- my research suggest that 3 days is sufficient, and take the usual care (antibiotics :(), rest, washing with a decent antibacterial wash and keep the wound clean. Anyone’s experience would be greatly appreciated. I’ve been putting off this surgery for awhile- after I had my son I just couldn’t commit to it because I needed to be mobile to look after him and a toddler, then got the Alopecia so I was focused on that. I’m still nervous- but as I’m on tofa long term I figure I better get this over and done with while my body is in good health otherwise. Thanks for any experiences shared!
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