By Pat David, Pennsylvania
The first time I ever heard the word eosinophils, a doctor was telling me that my eos were elevated, and I needed to stop a medication I was on. My records at this doctor's office are missing since we moved away, so I can't be certain, but the med may have been Singulair, which I did take at one time in the 90's.
The next event was a "toxic" thyroid which was removed in 1997 because of the possibility of cancer. Fortunately there was no cancer. Then in 2001 chronic hives set in with a vengeance causing two years of misery. (I'm sure there are hives in hell!) No doctor was able to find a cause nor help the itching. A short course of prednisone helped some, but as it tapered, the hives got worse. Then in two years they disappeared.
The next hint was shortness of breath and severely swollen ankles which were diagnosed as due to a leaky mitral valve requiring heart surgery. A second opinion at the Cleveland Clinic did not agree, nor did a third opinion at UPMC in Pittsburgh. So, no surgery, thank goodness. The shortness of breath led me to a pulmonologist at UPMC who did a lung biopsy and diagnosed eosinophilic pneumonia. At the time he thought it was caused by Macrobid because it can be a rare side effect of that med. Now he thinks the pneumonia was due to Churg Strauss, though he's still not 100% convinced that's the right diagnosis. The rheumatologists are trying to convince him.
I've been on and off prednisone, getting a good reaction but not liking to take it. I've had a positive skin biopsy for vasculitis, an inconclusive nerve biopsy, a positive EMG test, and, of course, asthma and chronic rhinitis as well as elevated eos. I am currently taking 20mg of pred twice a day, about to decrease to 10 twice a day. I'm being put on Imuran, and we'll see how that goes.
I seem to be getting off quite easily compared to many who write to the CSS list. I have some mild neuropathy and great fatigue except on prednisone, but at age 70 I can lead a normal life in retirement and enjoy every day of it. I do appreciate the uplifting messages of encouragement on the list. People on the list are very courageous and loving, very supportive of one another. Thanks for making the list possible.