thanks everyone -- a few questions for everyone
[QUOTE=annekat;109656]Bev, glad to see some responses. You should find some posts about really bad pred experiences in the archives, also your doc probably knows one should be tested for a certain enzyme before taking imuran. It sounds like things are going OK and you and your mom are handling them well, maybe even caught the kidney issues soon enough to recover that function. I've just been thinking about your description of your mom and her active lifestyle including a beautiful garden. We hope to hear she is doing well soon and resuming those activities.
First - Thanks to everyone who responded to my first post. I wanted to reply sooner, but as a caregiver, I've been pretty stressed out and have not had much time to be online.
Your responses have left me with a few questions and thoughts to ponder. These are a few.
First, I don't think the doctor did the enzyme test (TPMT?) on my mom before putting her on Imuran. I'm going to ask tomorrow because since posting, I started having second thoughts about the Imuran. over the weekend, mom seemed to be looking jaundiced and she had a couple of days of bad diarrhea. She also seemed confused and had a really bad time at dialysis on Saturday. We will be seeing her doctor tomorrow -- but my brother and I decided that we would not give her any more Imuran after the bad diarrhea on Saturday. I guess my concern is that she is elderly and also a petite person. The Imuran lit that I studied said that the geriatric dose should be 50 mg. but her doctor wanted to start at 100 mg. We settled on 75 mg. but not I'm thinking that is probably too much, or that she won't be able to tolerate the Imuran at all. After going through the recent scary pancytopenia as a result of cyclophosphamide, I'm not too thrilled by the thought that the Imuran may cause the same thing.
My other thought on all of this is that I wonder how quickly people have to move on to a maintenance drug after ending the initial cyclophosphamide-prednisone treatment. Three weeks ago, when she was hospitalized with pancytopenia, a couple of the nephrology team doctors mentioned that she would probably be going on Imuran, but at that time, they said that there was probably no great rush to start it as he immune system was already so beaten up from the cyclophosphamide. It is a different doctor that has started her on the Imuran -- that doctor not seeming to want to get going with something immediately. My gut feeling is that my mom could probably use a bit more recovery time before starting a new immune suppressant drug. JMHO of course.
I guess that leads me to my final question on how quickly people move from one treatment to the next. Is this based on blood tests, etc? I am kind of concerned about the lack of information I'm getting from the doctors lately. To my mind, there should be some kind of tests (ANCA levels?) occasionally. At the moment, my mom is on 10 mg. of prednisone and also Septra 3 x per week. She had actually been doing quite well since getting out of the hospital over 2 weeks ago, until she started the Imuran. I suppose I'm very wary of turning someone's body into a battleground -- after seeing what happened when my late husband was doing chemo for NSCLC lung cancer. One of his oncologists was young and very aggressive and probably pushed things too far with one of the lines of chemo -- kept going with it after some indication that it had harmed his heart -- and the next treatment really did a number on his heart. Once bitten, twice shy.
One other question - since well before my mom was diagnosed, she used to cough up sputum - no colour to it -- but she continues to do this -- has continued through the cyclophosphamide-prednisone treatments. Is this an indication that treatment is not working or sufficient?
Well, that's about all that I can write tonight. I'm caring for my mom right now and the prednisone has her up and restless this evening! Must go and keep her company.
thanks and take care all.
bev