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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 singh on
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That is good to hear Cws! I spoke to a Dr in America saying they do stem cell hair loss now. But it's from fat cells they use and inject it in the scalp and blood. However there is no garentee so I was skeptical about it ! This relapse is interesting so I hope to see these people regrow their hair it will give us all a idea on what is suitable dose to stay on..
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OMG!This really sucks so if we are lucky and regrow our hair we probably will never be able to cut our dosage down.The one pill every other day sounded to good to be true! When I tried dncb (which didn't work for me)I was told all your hair had to come in and you couldn't stop it till your hair was 2 inches long(that would be about 5 months).Maybe you have to let all your hair grow in (All body hair) and stay on the xeljanz dosage you are taking for several months before you cut down and then very gradually over time.This is all so experimental we probably won't know all the answers for years.Just wish this drug wasn't so dam expensive who could afford 25,000 a year for life.When will that topical version be available and what about the results of the trials that was going to happen in October.
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I would like to know also what happened to the trial results which were supposed to be released in October.
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Permalink Reply by kimberj on
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Football Fan, You are so right....this definitely sucks!! I'm not sure what the answers are, if there are any but I am so tired of trying everything in my power to keep my hair only to have it fall back out again. The sad thing is that I never reached full regrowth anyway. Also, I haven't even lowered my Xeljanz dose at all. I don't even want to think what will happen if I do lower my dose!!! I take the Xeljanz for my RA and Alopecia but I am having a flare up of both. I'm certain my Dr will up my Plaquenil dosage but I don't know about the Xeljanz. I'm not even sure I want to take more. Like you said, it is very expensive and my insurance company has denied it several times. As of this week, I am on my last appeal. I'm tired of the fight. As of today, I have started looking for a good wig and I'm going to concentrate on keeping my RA in check.
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Permalink Reply by AlopeciaDestroyedMyLife on
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Hi Kimberj,
Are you seeing signicant loss ?
Are there large patches developing ?
Where have you been optaining your Xeljanz from?
I lose tonnes of hairs every day it scared me at first but it is normal. I do have the odd tiny patch come back that quickly fills in again . This would be part of the normal hair cycle.
It may be possible under extreme stress that the xeljanz is being overpowered by the immune system at this difficult time. A temporary increase in dosage may be beneficial until you have your stress under control. There is no doubt stress causes alopecia.
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we must stop close our eyes as all treatments after a while he no longer acts on the corp he sold us the dream and leaves us in the shit no news of experience doing his 6 years there doing nothing saying he is going to find this is crap I'm depression all the world based on our espoire xeljanz but there's nothing he has not done you know give your new just when you are in distress as you destroy my alopecia and other life who have success on xeljanz but when you know all falls back in distress
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Hi ADML! Good to hear from you. I am starting to see significant loss. Little patches have turned into bigger areas. (I posted pics on my profile page).
I have been obtaining the Xeljanz from my doctor and Pfizer Xelsource. My doctor referred me to the program cause my insurance has denied the prescription. Pfizer supplys me with my prescription while it is under appeal. However, I am on my last appeal. If my insurance doesn't approve it this time, then I will have to file for a hardship with Pfizer.
I am hoping that stress was the cause. Things have been back to normal for me for a couple of months now which is why I can't understand the hair loss now. Quite a delay?! I do wonder if increasing the dosage for a short time is what I need to level out the immune system response. Thanks for that advice. I will ask my doctor tomorrow.
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It's horrible seeing the hairs fall out again. I think that's a great idea to discuss upping the dosage with your Dr.
After stressful periods the hairs don't usually fall out immediately. It would take between 1-6 months before alopecia starts, even if we were no longer overly stressed during that period.
Wishing you the best Kimberj . Do let me know how everything goes. Stay strong.
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You could have saved me 4 hours for a doctor's appointment and $100.00. My doctor pretty much said everything you did. Lol!!
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