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Thread: Confirmed Diagnosis

  1. #71
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    Default Re: Confirmed Diagnosis

    Hereís hoping (and expecting) your prayers will be answered. As Thanksgiving approaches, I remain thankful, especially my former PCP Dr Steven Draeger (retired) and Dr Villa Forte. I was in the initial stage of disease onset when I first saw Dr Draeger. He, like your step daughter, quickly realized I was very sick, but also that he didnít know how to treat me. A week in the hospital at Ohio State yielded the GPA diagnosis and a treatment regimen. After about 18 months, I found this forum and learned that a worldwide center of excellence in vasculitis at Cleveland Clinic was within reasonable driving distance. I was allowed to self refer to Dr Villa Forte. Sheís the best!! I look and feel like I did pre-GPA.

    Youíll get there!! Just keep on keeping on...
    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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  3. #72
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    Default Re: Confirmed Diagnosis

    I just got back from Cleveland Clinic. Dr. Villa-Forte ordered one in fusion of 1000 units of Rituxin this time. Every previous time has been two treatments of 1000, two weeks apart. She told me that I'm set to go to 500 units in 6 months. One of the nurses in the infusion center said she remembered what I was like the first time I was there and that I could be a poster boy for Rituxin.
    God bless Dr. Villa-Forte and the Cleveland Clinic. I could choose to get my treatments in Chicago now and save 1000 miles of driving but I like this Doctor. She keeps up with all of the latest studies on treatment protocol and really, really, really knows her way around this disease.

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  5. #73
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    Default Re: Confirmed Diagnosis

    I’m approaching my 3rd anniversary since diagnosis. My next rtx infusion is next Thursday. Daily mild headaches started coming back in January. Blood pressure has increased dramatically and For the last two weeks I have had recurring bouts of muscle pain in my back and/or left upper arm. These pains appear and disappear spontaneously.
    i suspect that all of these symptoms are related to GPS, but I’m not sure.

  6. #74
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    Default Re: Confirmed Diagnosis

    Quote Originally Posted by John S View Post
    Iím approaching my 3rd anniversary since diagnosis. My next rtx infusion is next Thursday. Daily mild headaches started coming back in January. Blood pressure has increased dramatically and For the last two weeks I have had recurring bouts of muscle pain in my back and/or left upper arm. These pains appear and disappear spontaneously.
    i suspect that all of these symptoms are related to GPS, but Iím not sure.
    One of our wise members years ago said "Just because you have GPA doesn't mean you can't also have another problem"
    Of course many new strange symptoms do appear from GPA from time to time but it is good to get them all assessed cause some times they might have another cause or need some extra attention and/or treatment. Some residual symptoms of GPA that come and go may improve from an increase in pred meds.
    Knowledge is power! Wisdom is using it to make good decisions!

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  8. #75
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    Default Re: Confirmed Diagnosis

    Once again I am a week away from Rituxin infusion and I find headaches and fatigue have been on the increase. I’m going to get this infusion in Chicago rather than Cleveland Clinic.
    I hope that the virus crises will have passed by next March so that I’ll be able to see Dr. Villa Forte but for right now, no overnight trips.

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  10. #76
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    Default Re: Confirmed Diagnosis

    I get Rituxin today. For the last month I have had three separate days of fevers. Each bout was after going on a bike ride. Temperatures up to 103+. No infection, no Covid, I’ve just read that fevers may be a symptom of GPA. I know that not everything is related to Wegs but I suspect this is. Supposedly, exercise can cause autoimmune flares.
    If they are related they should go away in a few weeks.
    Last edited by John S; 09-03-2020 at 09:49 PM.

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  12. #77
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    Default Re: Confirmed Diagnosis

    Dr. Villa Forte told me that my over reaction to exercise is probably not related to GPA. It really doesn’t matter what causes it.
    I recently bought an electric assist bicycle. I wear my heart rate monitor when I ride. Now I’m keeping my pulse at a maximum of 80 (previously it was 100). No more incidents since I made this change.
    Last edited by John S; 09-19-2020 at 10:52 AM.

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