Thursday, October 15, 2009
I did not realize I have not updated in so long. We went to the Cleveland Clinic in July. We saw a rheumatologist and a neurologist. They agreed with the diagnosis of Primary Central Nervous System Vasculitus. They told us that the treatment plan should be to do a very slow steroid taper, which we are doing at 2.5mgs at a time for now. He is down to 15 from a discharge dose of 40mg with no new strokes, so that is promising. We will taper down to 12.5mg next week. He is still on 150mg of Cytoxan. Once he gets down to 10mg of prednisone and remains stable for a month, he will be switching from Cytoxan to a milder and more tolerable chemo, Imuran. He will be on prednisone and Imuran for the rest of his life as long as he doesn't show any signs of new strokes. If he is no longer stable then the steroids go back up and back on the harsh chemo again. His local doctor thinks he should be ready to go back to work in January. He is very excited about that possibilty. Right now we are trying to keep all forms of the flu away from Ron. his doctor has advised to avoid crowded places at all cost and of course avoid known sick folks. She also advised he should wear a mask if he had to venture out in public, since even the regular flu would put him in the hospital. The doctor changed his anti depressant which seems to have helped the wild mood swings but we have been instructed to just accept this personality as close to the old Ron as we will ever get due to the multiple strokes on his frontal lobe. Each day we are just thankful to have another one, even the ones we take for granted. Thank you for reading and thank you everyone for all of your positive thoughts!