I'm now on a very quick taper of my normal Prednisone dose in order to get me in shape for my infusion treatments (we'll know if it's possible in three weeks). If any of you guys have been on long term Prednisone, you'll know that the tapers are horrible. I'm having constant panic attacks, hurt like someone hit me with a baseball bat, and am shaking out of my shoes. I can't even bead, because I'm shaking too much to hold a needle. Bob is staying here with me, because I'm so afraid.
I need some support. Help me through this, guys. Tell me it's worth it, that I'll get approved for the infusions. (Right now, I have to lower the Prednisone because I am outside the very narrow window that the insurance companies insist upon for paying for this ungodly expensive treatment) If I am not approved for this drug, my only other choice is a modified form of chemotherapy, and I really, really don't want that. The rationale behind the chemo drug is that it will beat down the part of my immune system that is causing my lungs to overreact to any stimulus. The down side is that it beats down your immune system, leaving you vulnerable. It's not something that they do as a matter of routine -- this last ditch thing is to try and improve my quality of life.
It's gonna get worse before it gets better, and I'm scared. Hold my hand, please.
Kathy N-V
P.S.: Damn, it's hard for me to ask for help.