I have been meaning to get on this site and give updates At the end of September I had my third series of infusions. Wow, I realize I am one of the lucky ones who has a positive response. Makes me feel stronger and better. My blood work shows everything on an uptick, but the C-anca is still positive at 1.4 That?s an improvement. My Rheumatologist met with my husband and me for about a one hour appointment. He has said this before. C-anca is not the only thing to look at. He said he has another Wegeners patient who has never had a positive C-anca. I also told him how weak I was before the last infusion. So as Pete reduces his infusions, my next series is scheduled for 4 months instead of six. I am again slowly trying to reduce that Prednisone, but under 9 the yellow mucus makes an appearance. We all know what that means, and I want to nip a flare in the bud, so I am frozen in place.
The day after the good visit with my Rheumatologist I had a first time appointment with an Endocrinologist. Never had sugar in my life, but it is a result of the prednisone. This doctor spent an hour and fifteen minutes with me. Wow, doctor?s spending time with patients. My sugar is not that high, but he put me on a mild medication and I now test it daily. He was careful about the medication and more blood tests because of the effect on kidneys. And he knew about kidneys and Wegeners. He asked when the last time I had my eyes checked (6 months) by the same ENT that diagnosed the Wegeners two years ago. Thought of Alicia. The endocrinologist even checked my feet. I felt it was time to add this specialist to my list. My GP doesn?t know what Wegeners is, and she told me to try diet and exercise for the diabetes. My husband just started with a new internist, knows Wegeners and I want to transfer to him. They are in the same group and frown on transferring within. If not able to do so I am out of there.
I realize I am now old enough to be the mother of all my doctors except the ENT. I tell them all this too. Maybe that?s why they treat me so good, the way they want their own moms treated. Next thing you know I?ll be bringing them casseroles.
Scroll down. I feel talkative today, so I am writing more in the general thread.
Be Well.
Masha