Skicpa
03-09-2011, 08:31 AM
My wife is doing much better since I first posted here, a month or so ago. The cytoxan plus pred combo is working for her again, and she has almost no hematuria, and down to about 300mg protein from almost 5500. Her neph dropped her pred to 30 now, down from 60 at the start. Her mental function is starting to return, and I see bits and pieces of her old self now almost every day. The catatonic state she goes into at 60mg is horrifying.
The new thing we learned in this episode is that pred can cause diabetes which in turn can result in weight loss. Her blood sugar was spiking in the PM to over 350 and we didn't know that until we bought a meter. 5mg of Glipizide seems to be doing the trick, she has gained about 5 lbs in the last few weeks. She has also been placed on acyclovir to prevent shingles as she tapers down.
We are thinking about a malpractice suit against her old rheumy for all the over testing and over treating, as it contributed in great part to the financial mess we are in now. It was truly ridiculous the specialists we were seeing, the tests my poor wife had to endure, and the time and money lost. We actually become afraid to say anything to the doc, because we knew it would mean being sent to 5 or more specialists who would take the appointment and then ask us why we were there. Rather than treat the disease and respect our time, we feel as though the doctor was doing everything he could to lay the risk off on others, while at the same time padding his pockets from our misery. We'll see, I know it could be stressful, but after what we've been through I don't see how it could be worse.
We are going to cancel our trip to Utah to see Dr. Koening at the end of the month, we just don't have the resources from which to make the trip right now.
The new thing we learned in this episode is that pred can cause diabetes which in turn can result in weight loss. Her blood sugar was spiking in the PM to over 350 and we didn't know that until we bought a meter. 5mg of Glipizide seems to be doing the trick, she has gained about 5 lbs in the last few weeks. She has also been placed on acyclovir to prevent shingles as she tapers down.
We are thinking about a malpractice suit against her old rheumy for all the over testing and over treating, as it contributed in great part to the financial mess we are in now. It was truly ridiculous the specialists we were seeing, the tests my poor wife had to endure, and the time and money lost. We actually become afraid to say anything to the doc, because we knew it would mean being sent to 5 or more specialists who would take the appointment and then ask us why we were there. Rather than treat the disease and respect our time, we feel as though the doctor was doing everything he could to lay the risk off on others, while at the same time padding his pockets from our misery. We'll see, I know it could be stressful, but after what we've been through I don't see how it could be worse.
We are going to cancel our trip to Utah to see Dr. Koening at the end of the month, we just don't have the resources from which to make the trip right now.