Diagnosed with WG about five years ago, affecting primarily my lungs and causing moderate scarring and interstitial lung disease. On 2 lt O2 at night. Have been doing fine and in remission until about 3 months ago when my energy level suddenly plummeted and I desaturated precipitously upon standing. Blood test which I had been taking regularly since being diagnosed revealed that my white and red blood cells as well as other blood results had declined significantly out of acceptable range. Anca markers were non detectable. After some delay, I was finally admitted to the hospital at which time I was diagnosed with pneumocystic pneumonia. In addition, they diagnosed me with myelo dysplasia. Because of the non detectable anca markers, my rheumatologist does not believe the Wegner's is flaring. My question is is it possible for Wegners to be active without anca markers? I am currently being treated with rituxan, 80mg prednisone, and vidaza for the dysplasia. Am on 4 lt O2 at rest and 6 lt with activity, but still rapidly desaturate rapidly upon standing or movement. Anyone heard of anything like this combination of symptoms or have any suggestions. Anything is appreciated. Never been so out of gas in my life!
Thanks,
Gary
Lake Saint Louis, MO
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