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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 AU1989 on
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I went to see Dr King on Tuesday. It was a four hour drive each way but Dr. King is very thorough and sympathetic. We talked about my history, alopecia overall and xeljanz. After my blood work results I will be using the co-pay card for 12 weeks. We went through his local pharmacy because they know the process and have the best price. After 12 weeks if there is success then we will lobby the insurance company for help in covering the medicine. Like Seahawks Dad I am hoping for some results in this 12 week period. He also has me on prednisone and prilosec. I will let you know
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Hi AU1989,My doctor was also thinking of adding Prenisone. What dose did Dr. King put you on and for how long? Thanks.
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Hi AU1989 I'm on xeljanz and I take Prilosec.Do you take them at the same time or space it out?
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Havent started them yet ( next week) but doctor didn't mention any concerns about taking them together
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Hey Football fan. I've been on xeljanz for 15 weeks and kind of am in the same boat as you. I have gotten my eyebrows and some arm/leg hair back but am slower to respond than other people it seems like. I'm going to try to give it 6-9 months and then see if i want to keep going because at some point hte cost is going to be too much. I'm in the process of appealing the insurance company but in the meantime tried the online coupons that i googled. I just typed in xeljanz coupons and found a few sites that had coupons (good rx.com and some others for example) I printed off the coupons from about four sites and took them each into walgreens. The pharmacist scanned each one to see which one was the largest discount and it ended up saving me 1800.00 on my first refill. I was totally shocked it worked but the pharmacist said it should be good for my next refill as well. hope this helps!! good luck!!!!
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Thanks Julie good luck.Keep us posted on your progress.Going to try that for my next refill.
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Permalink Reply by AlopeciaDestroyedMyLife on
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Here is this months photo. Keep your eyes peeled for next month as I will have a little treat for you all :) The sides are taking much longer than everywhere else but I am getting a few hairs and given time I know it will fill in eventually.
I have been taking Xeljanz now for almost an entire year.
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That is incredible. I am so happy for you and it gives us all hope. I am in Ireland but I have my doctor seeing can something similar to Xeljanx be found here. Thank you for posting your pictures, it really can lift your spirits when your feeling a bit down.
Continued luck to all on the programme.
Yvonne.
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happy to give out any support I can .
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