I think this might be the longest stretch I have gone without posting an entry. We left off in June. I suppose I will just dive right in.
So we did a little taper at the beginning of summer. It started with his home does. We went from 10mgs to 8mgs. That was successful. Very small move. The next change we made was the IVIG and Methopred dose. He was getting 350mgs of methoprednisone once a week. IVIG and Orencia once a month. I wanted to try splitting the dose to IVIG up. My reasoning was his skin became so clear after those monthly infusions but didn't last long. So our doctors consulted with the experts and they agreed it couldn't hurt. That is when we went ahead and implemented the second taper. We did not go down in dose but rather spaced out the steroid to every two weeks. That was in July and August. Our September appointment was yesterday. Gary is doing well but not well enough to keep tapering. We had a few labs tick up twice. Not jump up, just slight tick up a few points. His AST and ALT are a low high. I really wanted to hear lets keep tapering. There are smalls signs of inflammation. Calcium deposits have been making there exits. Our doctor says she would be more comfortable if they were just gone first, then taper steroids. But we have to try. 1 year and 2 months of once a week methopred pulses is enough. But if we get to aggressive with our taper, that could lead us back to a place we don't want to be. A place we are heading? His cuticles look great. His skin is ok.
Two years ago when we tapered all the way down to 1mg of prednisone with no weekly pulses, it ended in disaster. The onset of this diarrhea. Nothing that was alarming but just enough that we ended up with one little sick boy. A boy who wasn't absorbing medications. And now, it is slowly making its return. I am thrilled with how well Gary does with what he has. I am being pulled into the great darkness of worry again. At the beginning of summer I was feeling hopeful and empowered. I told them to be careful with me. I am in this game with myself of were tuff, we can take it. Let Gary's body figure this out on his own. I want to see him normalize. Feels like my rug was pulled out from underneath me yesterday. I am standing backup however. We will get this figured out. We have a repeat stool test and see the GI doctor on Monday.
Today was the first day of first grade. I made it all the way out to the parking lot before I boo hoo'd! Yay me. Drove to school at lunch to check on him. Put more sunblock on him. Everything was going great which made me feel better. Cookies and fresh bread are baking.