Debbie, I'm so sorry. You've been through a lot, no wonder you feel sad. How wonderful that you have a supportive husband. That is huge, and you are a very lucky woman in that respect.
You need to talk to your doctor about your concerns regarding your medication. Maybe he can come up with a plan to get you off the morphine by substituting something else. You have nothing to lose by asking. I think the reason you can tolerate the IV pred. and not the pills is because the IV bypasses your stomach, though I'm no expert on the subject.
You asked about our meds, etc. Right now I'm on two-three pills for hormone replacement, Plaquenil, Imuran, folic acid, acyclovir and I inject myself with methotrexate once a week. I'm hoping to get off of the MTX when the Imuran takes over. I was just bumped up from "undifferentiated connective tissue disease" to lupus and Sjogren's which seems to be focusing on the nerves of my left side, various joints, muscles and my brain. I'm deaf in my left ear, possibly from the lupus, and live in fear of going completely deaf once the disease progresses to my right side, which it appears to be doing. So you see, I do understand your fear...fear of the disease, fear of the meds, fear of not taking the meds, all of it.
I wish I could offer you some answers and comfort. All I can say is please continue to vent to us. We understand you and what you're dealing with. I wish you all the best.
You need to talk to your doctor about your concerns regarding your medication. Maybe he can come up with a plan to get you off the morphine by substituting something else. You have nothing to lose by asking. I think the reason you can tolerate the IV pred. and not the pills is because the IV bypasses your stomach, though I'm no expert on the subject.
You asked about our meds, etc. Right now I'm on two-three pills for hormone replacement, Plaquenil, Imuran, folic acid, acyclovir and I inject myself with methotrexate once a week. I'm hoping to get off of the MTX when the Imuran takes over. I was just bumped up from "undifferentiated connective tissue disease" to lupus and Sjogren's which seems to be focusing on the nerves of my left side, various joints, muscles and my brain. I'm deaf in my left ear, possibly from the lupus, and live in fear of going completely deaf once the disease progresses to my right side, which it appears to be doing. So you see, I do understand your fear...fear of the disease, fear of the meds, fear of not taking the meds, all of it.
I wish I could offer you some answers and comfort. All I can say is please continue to vent to us. We understand you and what you're dealing with. I wish you all the best.
