By Kathryn Mattingly, Connecticut
Soon after I got married in 1990, I noticed that whenever I exercised, I would start coughing. I had no idea why this was happening as I had always been very healthy. It continued to worsen. My doctor dx me with exercise induced asthma and put me on albuteral. As the years passed it worsened to asthma year round regardless of what I was doing. The treatment was always prednisone with increased doses of it along with Advair, theophyline, singular, allegra D and many more drugs that I can't remember the names of.
Around 1996 I started having terrible sinusitis. I then lost my sense of taste and smell. I also became allergic to aspirin and ibupropen.
In 1998 I lost my voice for no apparent reason and couldn't speak for over three weeks.
By 2001 I started having terrible, awful headaches and extreme fatigue. I started seeing an ENT who did surgery and found polyps that he removed. It didn't seem to help as I was just as congested afterwards if not worse and the headaches continued. By this time I had had three visits to the emergency room via ambulance and was hospitalized for 4 days after an extreme asthma attack.
Then, in early 2003, I had strep throat followed by pneumonia. At this point I was at my wits end as we had adopted two children and they needed my constant care. I was so sick that I felt like a failure as a mother and wife. My doctors didn't know why I was so sick all the time and I started to believe that I was doing it all to myself and that I was really just sick in the head.
In September of 2003 right after my dad died I started having extreme joint pain in my legs, back, shoulders, elbows feet and hands. My regular doctor put me on Cymbalta because she said I was just depressed (no kidding). When that didn't work she suggested I see a shrink. I refused. She then suggested that I see a rheumatologist. She immediately increased my prednisone which gave me much relief from the pain. Within a few weeks I felt great! She suggested that I might have Wegeners or possibly Churg Strauss, but she doubted it because my eo's and sed rate levels were not significantly high.
After a year of being monitoring I came off the prednisone completely in September of 2007. Within a week I was so sick that I thought I was dying. That is when my eo levels had gone up to 33% and I was put back on prednisone. I am now officially diagnosed with Churg Strauss. What a relief to know that I am not crazy and that there are many people out there who have very similar stories. I am now stable and feeling fairly well. I am on 15 mg of methotrexate, 60 mg of hydroxychloriquine and 10 mg of prednisone.