I started out on 40 mg. of prednisone for a week. Was on bedrest for 3 weeks. Saw minimal changes from many symptoms, then my doc spoke with rheumy and they dropped it to 20 mg. without any noticeable rapid change. Labs sky high. Gradually improved... Saw the rheumy on day 21 from onset, and was mostly pain free by that time, and changed that day to Medrol and labs finally responded.
I have not been in pain since other than occasional twinges or mystery pains that seem to take care of themselves...my primary complaint has been side effects from the med...sleep disturbance, insomnia, hot flashes, shakiness, irritability, etc.
In 4 months, I have titrated down from 20 mg to 10 mgs and am holding at this level now for about 6 weeks.
The doc seems to feel that there is no hurry to reduce... I pressured him to do so because the side effects from the steroid were making me truly miserable. He doesn't seem worried about the overall level as long as I feel okay. I had dropped from 12 to 8 mg and I had terrific headaches, sweats, just sick and he immediately bumped me back to 12 and lowered me to 10 later without much ado and here I sit. I must say, I do feel better at this level than I did at higher levels, as the side effects from the pred are greatly reduced.
I am reading about so many others who are still in pain every day. I thought a relapse meant that they went from reduced or no pain, into a flare ... And that flares weren't likely if you were stable on your dose. Are those in pain not taking enough steroid?
I'm learning a lot here and I am so grateful to have found you... Several people have questioned my diagnosis... I do have great faith in my rheumy and he is greatly respected... He is very smart and up to date on recent studies, etc. I'm beginning to see some connections into some past happenings that may have been the actual onset of PMR that my GP missed at the time.
Can you define remission and relapse for me?
Do other find yourselves sensitive to sun?
What kind of headache should alarm me (since I do not have GCA at this point?)