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Thread: Diagnosed a year and a half ago

  1. #1
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    Default Diagnosed a year and a half ago

    Hey All,

    Christmas Day 2017 (60 years old at the time) came down with what I thought was a bad cold. Lots of sneezing, runny nose. Fever. Controlled with OTC drugs but it was a longer than usual slog. Then as the more messy symptoms subsided the saddle nose appeared. Then a few months of quiet, no symptoms. In all this time I had one bloody nose, a real gusher, but none since. As a result of the saddle nose, I had self-diagnosed Wegener's but dismissed it as "too rare". Then over the summer my ears started to plug up, which was especially bothersome as I am a musician. One ear eventually cleared up, the other got worse.

    I finally went to my PCP, very agitated and upset. BP and pulse were through the roof. I told her I thought I had GPA. She ran blood panel, it came back pos C ANCA (just one titer over neg) she referred me to an ENT and Rheumatologist and I was on my way. Lungs and kidneys are and have been clear, got a tube in one ear, which cleared up that issue. ENT now has me on biannual checkups, Rheumy has me on 3 month check ups. The initial prednisone did nothing, but nearly a year of MTX, folic acid and Bactrim seem to be doing the trick (we talked about doing nothing at all but finally agreed that "soft care" pro-active meds were a prudent course.) At any rate, I am doing OK, eustachian tube in the "good ear" is a little wonky and noisy and I may get that ear tubed too next ENT visit. PR 3 is still high but lower than it was before I started therapy, P and C ANCA are neg. CRP is low too. Hanging in there. I exercise a bit and eat a keto/animal product diet and watch my weight. I am a strength coach by trade, but play music as an avocation/hobby. (And my BP is now about 120/70 and resting pulse now in the low 60s...both of which I take as positive signs.)

    Preamble to above: I have a friend and coach colleague who is a pro runner, GPA sufferer and spokesperson for the Vasculitis Foundation. I sent in a donation to his Victory Over Vasculitis team the summer of 2017 and received a team T shirt in the mail. When I opened the package I remember thinking, "vasculitis sounds horrible, I hope I never get it. glad it's rare." And then a few months later...thanks Santa.

    I hope this wasn't TMI. Glad I found this group!

    -Randy

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  3. #2
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    Default Re: Diagnosed a year and a half ago

    Welcome to the forum, Randy, and thank you for sharing your story. It is amazing how you diagnosed yourself on you own.
    It is also interesting that you have developped a saddle nose without much nose bleedings. I've developped mine after few years of non stop bleedings and crusting.
    If your "TMI" meant "too much information" - don't worry, it is almost never TMI here
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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