Before I went to the doctor this morning, I knew how much better I felt. That was even though I sat up for two hours in the middle of last night listening to a book after my second 60 mg dose. I made myself go back to bed three hours before I had to rise, and rise I did! Wide-eyed...
The doctor told me that he thought I should stop the high dose and go down to 5 mg a day. We had two conversations: one about GCA and another about quality of life. I was direct, though I respect him a great deal and have confidence in him. I feel that after five years of high doses until this year... there is no need for me to worry about additional steroid-caused damage at nearly 84--unless I presented with some kidney or heart issue. I've got a laundry list of comorbidities and three metal components out of four limbs, and I want to be as comfortable as possible and see.
Just a point of interest...I thought you always had to taper off steroids, no matter what. He said it wasn't necessary because I had only been on them for three days. Of course, I believe him. {Once, when I was hospitalized and had to receive IV steroids for three days, larger doses, that necessitated a taper.}
The ophthalmologist's exam yesterday showed no new damage. My rheumy also wants me on the 5 mg for three days before I see the neuro-ophthalmologist, and I'll revisit the rheumy on the 12th, "unless you need me sooner," he said. He wants the neuro to examine me and do a visual field without the high doses of steroids.
I feel so fortunate to have him. He's opinionated and bright but realizes that medicine is not an exact, cut-and-dried science. He knows that when it comes to GCA, you cannot rely on the blood tests alone, and when you consider the whole patient, that means listening. I'd say he is in his 40s, younger than my sons!
Once again, thanks to the forum, I learned how to be a more vocal patient and stand up for me!💞
Prednisone and blurry vision
Blood tests and tapering
Rheumatologist
