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Thread: shankxonline - My path to identify GPA and overcome it

  1. #21
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    Default Re: shankxonline - My path to identify GPA and overcome it

    Quote Originally Posted by sshiveley View Post
    I take 1 step forward 2 steps back. When I had written that I was down to 7.5 mg of Prednisone, yet another flare up, I was weaning slower this time. Rt eye is beginning to protrude again, Double vision peripherally isn't going to get any better. Rheum bumped me up to 20 mg Prednisone and possibly getting Retuximab sooner. Sherry
    my eyes have been fine since I went on retuxin

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  3. #22
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    Default Re: shankxonline - My path to identify GPA and overcome it

    11/6 - Starting with Methotrexate (12.5/week) along with Prednisone currently at 40mg. Rheu is optimistic that I will be able to taper the Prednisone dosage. Anyone else on similar dosage? How was your Methotrexate introduction experience? What should I watch out for?

    Eye symptoms remain (redness, pressure) - but other reports look normal (touch-wood!)

  4. #23
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    Default Re: shankxonline - My path to identify GPA and overcome it

    I'm on the same dose of MTX as you are. I was started on 10mg/wk about 7 years ago but that is a really low dose, and I flared, so it was raised to 12.5mg, which is pretty common, though some use more, possibly depending on body weight. I was probably on around 20-30mg prednisone and am now down to 5mg. This is a level that many stay at, due to the difficulty of tapering further, when we have been on pred for several years. It seems these days many docs are getting people off of it before that happens. At first, with MTX, I felt slightly nauseated and just kind of yucky, but I got used to it and now feel pretty much nothing. It helps to split the dose between morning and evening. Some will have worse side effects than others, and I hope you aren't one of them. Good luck!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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  6. #24
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    Default Re: shankxonline - My path to identify GPA and overcome it

    I don't post a lot on here, as I too am new to this ugly disease, there are so many that have so much more knowledge about this than I do, so I will continue to read their thoughts and advice. There are days that I have been ready to walk into my boss's office and say that I can not do this anymore, (I work in a level 3 trauma ER) I am constantly exposed to every germ you could and could not imagine, but I have to pay the bills, funny thing, they just keep coming every month haahaa. Some days I feel good, others not so much, decreasing my prednisone takes its toll, I can tell every time I am decreasing that I know I will have to start at a higher dose and then wean again, only to go to a higher dose again, the cycle keeps repeating, spilling blood in my urine, constant runny nose, cough. Seems all I do is complain, but being a part of this forum, I know you all understand how it is. I strive for a positive attitude for attitude is everything. Best of luck to you Shankonline and all of the others struggling.

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  8. #25
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    Default Re: shankxonline - My path to identify GPA and overcome it

    Quote Originally Posted by sshiveley View Post
    I strive for a positive attitude for attitude is everything. Best of luck to you Shankonline and all of the others struggling.
    Indeed - positive attitude is everything, sshiveley! Seems like the only thing we can have control over!
    Good luck on your journey as well! Keep sharing!

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