Happy 4th anniversary!

Today is my anniversary!  The fourth anniversary of my diagnosis.  I walked into my rheumatologist’s office exactly four years ago today, and I walked out an hour later with a diagnosis of EGPA/Churg-Strauss Syndrome. It was my very first rheumatology appointment, and I had spent six months of hard work and perseverance to reach that moment.  It was the hardest thing I had ever done in my life.  I thought that reaching a diagnosis would be a major turning point toward feeling better, but it has turned out to be just the beginning of what has become a long journey.  I’ve spent the last four years working on staying as healthy as I can and trying to keep the vasculitis in check.  This has not been easy.

I like to collect and analyze data.  So just for fun, here is a list of the immunosuppressants I have received during the last four years:

  • 14 rituximab infusions
  • 60 IVIg infusions
  • 28 mepolizumab injections
  • 79 methotrexate injections
  • over 30 grams of prednisone – thats over 30,000 mg!

I consider myself to be extremely lucky so far and I am so very grateful to be doing as well as I am.  I am especially grateful to my clinicians, the patients I have met through the Vasculitis Foundation, and my family and friends for their support.  It looks like my vasculitis is not going anywhere, but neither am I.

For more about my disease course.  For a summary of my diagnosis with EGPA/Churg-Strauss Syndrome, see here.  For a summary of the first 3 1/2 years of my treatment course, see here.

One thought on “Happy 4th anniversary!

  1. Jennifer Trofe-Clark

    Wow!!! That is a very impressive amount of immunosuppression- especially over that short a time period. However, this complicated and unrelenting disease has met its match in such a strong, smart and inspiring patient like you. Thank you for sharing.

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