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Thread: New Weggie

  1. #11
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    Default Re: New Weggie

    Alysia,

    Not sure what is causing the pressure, but the docs believe it is the Pred and not disease. Nonetheless I'm going to squeak and make noise until I can get an MRI on the eyes. Overall though my optic nerves still look good. I pointed the doc to this article for context:

    https://www.reviewofoptometry.com/ar...granulomatosis

    I am with you in terms of acquiring the most knowledge one can get on this disease. Every case is unique so there is an infinite amount to learn, but I'm doing my best. I'm big into home diagnostics as well: urine test strips, BP/Blood Sugar/SpO2/Pulse.

    When I meet with Dr. Villa Forte I will certainly get her recommendation on a neuropthalmologist with GPA experience.

    Excited at what this place will bring to my life. I don't do Facebook or social media so this is new to me.

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  3. #12
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    Default Re: New Weggie

    Hi Richard,
    Sorry you have been diagnosed with this disease but happy you have found us! I just turned 40 & have had this disease for over half my life (diagnosed when I was 17). There is hope. I think it’s easier for me than a lot of people whom have lived most of their life without this disease. I honestly don’t remember how I felt before! The point is yes-you absolutely can live with this. The trick is to know your body & know when to rest (I push this envelope all the time). Some days are good and some not so much. I am on prednisone and rituxin. My ocular pressure goes up when I get the infusion because they also add 100 mg soul-medrol. I believe your high ocular pressure is from steroid use. Prednisone what a fabulous and horrifying drug! I hope everyday gets easier for you. Keep your head up! WG isn’t for the weak that’s for sure. Look at all the warriors here! You got this!


    Sent from my iPhone using Tapatalk

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  5. #13
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    Default Re: New Weggie

    How long have you been diagnosed (for the 72 year old gentleman that plays golf) ? I am a "fnew member" too and this is a very encouraging picture you paint. So happy for you. I will see Dr. Villa Forte in August.
    Last edited by AngieB; 07-11-2018 at 01:10 PM. Reason: mistake

  6. #14
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    Default Re: New Weggie

    Quote Originally Posted by AngieB View Post
    How long have you been diagnosed (for the 72 year old gentleman that plays golf) ? I am a "fnew member" too and this is a very encouraging picture you paint. So happy for you. I will see Dr. Villa Forte in August.
    Hi Angie,

    I'm the 72 year old hacker (bad golfer). I was diagnosed in January 2011. I had been sick for about a month with odd symptoms - persistent earache, loss of energy and appetite, coughing up a little blood, and night sweats. It took about 18 months before I began to approach being in remission. It took another 18 months before I felt normal all the time.

    Hang in there. Take your meds. Get some exercise. Watch what you eat (especially when on high-dose prednisone). Enjoy life as much as you can.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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