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Thread: Diagnosed August 2020 - New to WG

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    Post Diagnosed August 2020 - New to WG

    The short story: It began with intense joint and muscle pain and went through a gambit of tests. They found I had adult celiac and thought it was over. The joint and muscle pain continued and had abdominal pain which I thought was appendicitis. During my CT scan they found vasculitis in my aorta and had me rush to the ER. After a few days in the hospital and being put on large amount of prednisone, I was sent to my rheumatologist. After diagnosis I started on four weeks of Rituxan and then to follow up with an infusion every 6 months. Iím currently on Rituxan and Bactrim (3x per week). I am extremely sensitive to medications and have had to be cautious about anything I take. My wife and I may both post and ask questions. We will try to be sure to identify who is posting.


    I am so thankful for all of the people who have helped and said prayers for me. Especially those that did not know me personally. I have been humbled by all of it and hope that I can make a difference with my life. I found a quote that has helped me tremendously throughout this journey and thought it would be worth sharing.


    "The everlasting God has in His wisdom foreseen from eternity the cross that He now presents to you as a gift from His inmost heart. This cross He now sends you He has considered with His all-knowing eyes, understood with His divine mind, tested with His wise justice, warmed with loving arms and weighed with His own hands to see that it be not one inch too large and not one ounce too heavy for you. He has blessed it with His holy Name, anointed it with His consolation, taken one last glance at you and your courage, and then sent it to you from heaven, a special greeting from God to you, an alms of the all-merciful love of God."

    St. Frances de Sales

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    Default Re: Diagnosed August 2020 - New to WG

    It’s scary, isn’t it? But don’t worry, you’ll get to know what’s happening in record time. Did your doc put you on steroids or immunosuppressant therapy? They started me on mycophenolate a month after my first couple of RTX infusions, been on it nearly two years now, although I am down from 50mg to 5mg panafcort daily.

    Every person on this forum knows what you’re going through, and we all have problems and solutions we’ve figured out over the years. Because Wegs is so random in its symptoms though, just ask whatever questions you or your wife may have. Believe me, nothing will sound strange.

    Here’s hoping you’ll stay on maintenance for a little while and then tapering down in no time!
    Life lessons for all of us;

    Never eat at a place called Maís.
    Never shoot pool with a guy called Pop.
    Never try to eat anything bigger than your head.

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    Default Re: Diagnosed August 2020 - New to WG

    Thank you.. Definitely not an easy pill to swallow. I started out at 80mg of prednisone a day and began Rituxan infusions. They had to give me something to calm my heart rate because of the prednisone. Tapered off of prednisone and only on Bactrim awaiting my next infusion in Sept. I find the ANCA and PR3 numbers a little difficult to understand. My Dr changed labs and the numbers for the PR3 are referenced differently than before. Can a cold and sinus infection cause the ANCA to pop? My numbers were tracking down and the ANCA went slightly up but the PR3 has been trending down. I appreciate any and all input.. Thank you!

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    Default Re: Diagnosed August 2020 - New to WG

    Sorry this occurred with you.... Stress, other illnesses can cause a flare... be kind to yourself, I have been diagnosed for 25+ years... The Rituxan is a great medication...You may find your MD following PR3 more closely than the ANCA, as it appears more diagnostic in the long run.. ANCA test has lost it's "gold standard" designation over time.. I wish you the best... I am currently on the Rituxan infusions every 9 months with no other medications being taken and have been stable for 4 years other than musculoskeletal symptoms and fatigue. Lots of good people on this site, have been away for a while.
    Last edited by Nancy; 08-19-2021 at 03:17 AM.

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