[DiAnnCort]

I went to an Hemotologist because of low platelates in April 2004--they were down to 14,000, no one knew the reason yet. He immediately placed me on 10 4mg X 5 days. It did bring the platelets up for approx 2 weeks. They, of course, made me sick and gained 10 lbs.

Never spoke with my Oncologist at all from 4/2/2004 at the regular appt and always had to go throught the nurse for everything. My next scheduled appt was for 5/21/2004. I had blood tests twice a week and was forwarded on to the doctor. They were up and down until 5/7/2004 when they dropped to 11,000. My doctor was on vacation until Monday, May 10, 1004, so his associate ordered to go back on the decadron 10 per day for 5 days @ 4mg. When my doctor returned on Monday from vacation, again, I never heard from him, but the nurse called and said the doctor wanted me to start 15 pills per day 4mg - 5 in morning-5 at noon and 5 at dinner until he saw me at my next appt which was not until 5/21/2004.(11 days). Never speaking to the doctor himself, I told the nurse that I was really getting sick with the decadron, but she said that is waht the doctor ordered and that is what he wanted me to do. I took the 15 pills per day for 1 week. Monday, May 17, 2004 I told my husband, I am calling the doctor. I am getting sicker and sicker and not any better. Again, the doctor would never call me back so I went through the nurse again. She said she would check with the doctor and call back.
To my amazement, when she called me back, she was in a little panic and said "we have to get you off all these steroids". I replied, "Who put me on that many". She changed the subject.I told her that I would start taking 9 per day @ 4mg (down from 15). Her reply was, "Okay, you could try that and see what happens".

I have since changed fould wonderful Doctors in the West Virginia area who have accepted me as there patient and we are heading in the right direction. I have gained 30 pounds in 6 weeks-my face is so swelled and distorted my friends and relatives cant believe it is me. I have taken trm term disabiliy because of weakness, water on the knees, use a cane to get around. I will be having surgery and 7/8/2004 to remove my spleen. My diagnoses is ITP at this time with Sjrogens Syndrome and Lupus has not been ruled out.

But, my question to whomever will answer it is this........In the month of May I had over 700 mg of Decadron......Is this an excessive amount and was I being overdosed on this deadly, poison medicine.

I am down now to 8mg per day until my surgery on 7/8/2004. By the Grace of God, I believe, that is how I got through it all.

Maybe a misunderstanding between nurse and doctor and dose?? I am not sure what happened, but I would like some kind of feed back from someone out there.

Thanks
Diane