I'd like to update to my original post. I went for a follow through with my Rheumo after the first attempt to taper down from 15 mg. My repeat labs had shown an increase in the sed rate (30/85) and a decrease in the CRP (67/34). When he asked about headaches and scalp tenderness, I answered that I often get afternoon headaches and my scalp is sometimes tender. I couldn't really answer how long this has been going on. This heightened his concern about GCA and my dose was increased to 60 mg. Mind you, my headaches are a dull ache on the crown of my head, not the temples and far from acutely painful. But because of my inflammatory markers, my response couldn't be ignored. I've had another follow up and my markers are going in the right direction. Sed rate: 20 and CRP: 3, however, he is still concerned about GCA. Since I'm doing well, he's reduced my 60 mg. to 40 mg daily, but he did strongly recommend the biopsy which I declined. The plan of care now is to repeat labs in 10-12 days and follow through in a month. I assume that we will discuss tapering at that time.
He also asked if I would consider Actemra, if my insurance covers it. I said yes, but I'm really not sure. I will see my Optometrist in a few weeks and maybe she will give me a little different perspective. My gut wants to think that my dull scalp discomfort is any number of benign things from BP and Blood Glucose fluctuations, to a constant state of hunger from the Prednisone, to dehydration and just plain old ordinary stress (all things considered). I also have a new diagnosis of atrial fibrillation and the Prednisone and lack of sleep is certainly not helping my irregular heart beats.
By the way I do have idiopathic small fiber neuropathy which has been less of a concern in terms of discomfort, but lately it seems more pronounced since my PMR pain is relieved overall. My complaint is numbness and tingling down my calves and feet which is a far cry from the pain of PMR. I take Gabapentin 300 mg at bedtime.
So, at this point not only am I interested in the taper stories, but GCA experience.
Thanks for hanging with me.