From Dr. Kingsbury:
Mrs. Cox,All very good questions ...First, when I talked with Dr. Goodman, she we had discussed the possibility of having her move your Wed appointment to Friday down in Lake Oswego. The reason, I thought it might be best to see Charlotte after she had completed the 3 infusions in hope of determining level of response. We then thought that Julie Yu might be able to see her once, perhaps 10 days or so thereafter, while Dr. Goodman is away. Then you could be back on track with Dr. Goodman on her return.
As for methylpred, I will likely request that the first infusion be administered over one hour. Yes, it could be increased to go over 30 min., but I'd prefer to do it over 60 min with the fist one. No special prescautions/instructions needed prior to the infusion, except that you could hold off with the oral steroid on those 3 days of IV steroid. I will talk more on that next Tues; however, just forgo the AM dose of steroid on Tuesday.
By the way, Peds Day Treatment unit tel #, should you need it, xxxxx (I think that's correct ... or xxxx). As for instructions after the infusion, we usually like to keep her about 30 min or so just to make sure she's OK (i called them, they have us booked for 2 hours each day). The medicine does promote a metallic taste in the mouth which can be masked with some high-flavored food item. Obviously, Charlotte would not be able to let you know about that. Normal diet is otherwise fine. When on high-dose steroids, either orally or IV, it's a good idea to limit salt intake by not adding salt to food items, and trying to avoid foods with a lot of salt.
As for timing, I'd hope for a fairly rapid response. Therefore, I was thinking that a Friday visit with Dr. Goodman would likely make more sense than a Wed due to the fact that we would have 2 of 3 infusions completed. If it is too difficult for either you or Dr. Goodman to rearrange schedules, then stick with Wed. I hope that answers most of your questions. Dan Kingsbury
So next week looks like Tues - Thurs for 2 hours each day at Emanuel. Then Friday its down to the south for our eye appt (yes i am being more generic, thinking of making this a private site... thinking way too much). So its a busy week.