I am a forty-three-year-old Indian Hindu mother of two daughters, who are twelve and seven. I first got the signs of this strange disease in 1993, three years after my first delivery. There was idiopathic clubbing on my fingers. No physician could tell me the cause. One doctor identified it as early scleroderma and prescribed prednisolone and Nifidepine in small doses. But I got scared of the steroid and also of d-Penicillamine as I was having low blood pressure, so I did not bother to take either of these.
Suddenly at the end of 1993, heavy and severe bouts of coughing started. It was a dry cough. Each bout lasted for thirty to forty minutes. Doctors found fibrosis in my lungs, but still kept me on medication. At the same time I got pregnant. One physician advised me to terminate the pregnancy at once and start Depenicillamine, but I refused. My gynecologist, however, encouraged me and we closely monitored the fetal growth. Miraculously all the disorders vanished.
I gave birth to my second daughter in September 1995. She is absolutely normal and tops her grades in school. During lactation, there was no cough, only the clubbing with Raynaud's. However, after I stopped breast feeding (sometime in June 1997) the cough started again, but this time in smaller duration. Gradually the duration and frequency increased.
All the while, I was running from one doctor to another. Numerous pathological tests were done. Finally I came to know about Dr. V.R. Joshi, an internist who specialized in rheumatic diseases. I consulted with him. He started treatment of Cyclophosphamide from September 1998 through September 2000. At the same time, I was taking prednisolone, 40mg a day and then tapered to 20/15/10 mg a day over six months. During this period my blood sugar shot to an amazing 390. I took anti-diabetics but, after the prednisolone was reduced to 10mg a day, my sugar levels came back to normal.
Further deterioration of my lungs stopped and at present, shortness of breath is there, but with no coughing bouts. I was on prednisolone 5 to 10 mg a day up to March 2002. Meanwhile, during the winter months of November and December in India, my lung problem got aggravated. So I took two doses of cyclophosphamide 500 and 750mg.
My real woes started in January 2002. I developed severe arthritis. My fingers got swollen and my knee joints became inflamed. The soles of my feet hurt like hell.
My doctor took me off prednisolone in March 2002. In its place, he gave me Azathioprine [Imuran] with Colchicine, Naproxen, Diclofenac Sodium, and rofecoxib. I feel better only when the anti inflammatory drug is working.
Now I have left my fate to God. I am confident that I will survive with His blessings.
Email: [email protected]
Story posted 9-22-02
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