Hello @sjf1024 my heart goes out to you as I can relate to what you are going through. The beginning of this journey can be quite confusing on top of being debilitating! Depending on the severity of our symptoms, the length it took to get the diagnosis, the access to our medical providers and the lack of info we get in general it is all quite confusing and overwhelming! It falls on us to do the research, parse through good and bad info, find the reliable forums and try to make sense of it all. Add to that the fact that we are all different and there isn't a one size fits all or golden rule re treatment!
You are just at the beginning of you PMR journey which is still a huge learning curve in my mind, at least that's what it's been like for me.
I was diagnosed after months of being in pain which started in the wee hours of the morning and would progress in intensity through the day. I am 75 and up to that time an avid walker / hiker on the mountains surrounding
the valley where I live. Within about five months it seems that I went from being that woman to one that could hardly come down the stairs in the morning. I was diagnosed by my family Dr. Put on 20 MG of prednisone and within 2 days my symptoms almost disappeared. My instructions were to take 20 MG for a week, go to 15 for a week, then decrease to 12.5 . When I was on 12.5 for 2 days my symptoms came back with a vengeance.
My Dr then advised that I start again at 30mg for 2 weeks then decrease by 2.5 mg every week until I reach a dosage where symptoms start again but they are such that I can live with them.
As I understand it the idea is to try to reach the lowest possible dosage that allows us the least amount of discomfort. I am now at 20mg and so far so good symptoms wise.
That said I have side effects from the prednisone, sleeping, heavy sweating, bowel changes, thinning of my skin, feeling a bit dizzy especially in the morning etc. So I am anxious to get to as low a dose as possible.
I have not been referred to a rheumatologist and wonder if I should but specialists are hard to get to in my area.
My symptoms do get worse in the morning and I have changed my routine so that I eat sooner and take my pills. I can get heartburn easily so I must take them with food. My symptoms are mostly gone within a couple of hours and are bearable compared to what they were pre diagnosis.
I hope this helps and wish you the best of luck navigating through all of this.