Patient Comments: Churg-Strauss Syndrome - Patient Experience

Question:

How has Churg-Strauss syndrome impacted your life? Submit Your Comment

Comment from: george, 55-64 Male (Patient) Published: July 05

My life changed 12 years ago. I had severe asthma issues, then my doctor recommended for me to use prednisone and Singulair. I felt better and no issues with asthma. Once, I was done with my treatment, my symptoms became worse. I lost the use of my fingers in my right hand and the use of 3 fingers in my left hand. That’s when after a few more tests were performed that my doctor diagnosed me with the Churg-Strauss disease. They treated me with Cytoxan for a year and steroids. I felt good for a while. But from time to time even today, I still feel tired, lacking motivation because of this ongoing disease. I hope someday, someone out there discovers a cure, so that I can go back to my previous and normal life. Thank you.

Comment from: Donovan's Dad, 65-74 Male (Patient) Published: June 05

I contracted Churg-Strauss syndrome in October of 2001. My primary symptoms, which came on quite suddenly, were severe pain rushing up and down my legs and noticeable leg weakness. My family doctor recommended I have a lymph gland removed from my neck to look for signs of cancer. None was found. After one week in the hospital and poking and questioning by a plethora of doctors, I was called the mystery patient. After about two weeks the pain subsided enough so I was able to go back to work, desk job in a clean environment. After a couple more weeks, the pain and weakness came back worse than before, accompanied by swollen lymph glands under my jaw line. My doctor recommended that I see an oncologist who recommended another lymph gland biopsy, again with negative results, and a full body MRI that showed swollen lymph glands from my knees to my neck. Before seeing the negative results from the lymph gland biopsy, the oncologist thought I had stage 3 or 4 lymphoma and, after seeing the biopsy results, said he was stumped. He put me on a high daily dose of oral prednisone to reduce the swelling and reduce my elevated eosinophil levels. He recommended that I see a rheumatologist, which appointment took almost four months to get, and he made the Churg-Strauss diagnosis. Ultimately, after gradually reducing the daily prednisone dosage to about 15 MG, the dosage reductions had to be made in one-half MG amounts every three months to hold the symptoms at bay until I remained steady at 2 MG per day for almost two years. At that time I was told I was probably in remission and should try to stop using prednisone altogether. Luckily, the pain symptoms have not returned in the last ten years, but fairly severe weakness remains, along with thin skin and easy bruising (blood collection under scraped skin).

QUESTION

Asthma is a chronic respiratory disease. See Answer