Does anyone else feel isolated and misunderstood?

Sams57. Sorry to hear you are hurting. You may be part of our little (?) club here on the Mayo Clinic Connect. If so, welcome. We all care about you. I say "Club" in jest but this is really a fantastic group. Like others have said, Ask whatever question comes to mind. Other people have made great comments about upping your dose. And remember that upping the dose without the Dr is not some sort of slight to the doctor, nor is it "illegal". You are the best person to figure out if the dose helps or not. And, as others have said, it can take a few days for your body to respond. I got lucky in that my first dose of 15 mg took away 90% of the symptoms in a mater of 6-8 hours. I also had classical symptoms of bilateral shoulder and hip pain, and elevated CRP and ESR blood makers for inflammations. That said, you might want to get the primary care Dr involved. in those blood test (CRP and ESR). The primary Dr I have is very familiar with PMR and is better than any rheumatologist that I could have where I live (rural) if I could find one to take my case in a timely manner. You said you have a positive antiCCP which is a test given for possible RA (rheumatoid arthritis). Keep after that, as it is very important marker for RA (https://www.rheumatoidarthritis.org/ra/diagnosis/anti-ccp/index.html). Also get those other inflammation blood tests I mentioned. You MAY have PMR, you MAY not. Sounds to me like that is still unsure. They really need to rule out RA. Don't worry about taking prednisone right now. It is a med used for both PMR and initially when one has RA (until other drugs are tried for it). I am also a big proponent of self education on PMR and other inflammatory conditions. Don't let the technical stuff scare you. Nobody knows everything but everybody can know something about PMR. My journey with it started last April (at 63 y.o, male) and then finally got on prednisone in the beginning of May. Started at 15 mg per day. Have had great results with it and have tapered down to 4 mg without flares or any substantial pain. I truly believe that the PMR is gone and that I am just dealing with the slow taper (heavily suggested) to avoid adrenal insufficiency issues that the prednisone creates. FYI- I have employed some other therapies such as acupuncture, chiropractic, meditation, bone broth and L-glutamine, and high doses of Omega 3 fatty acids (fish oils). These are to address the very high levels of longterm stress that I have been under for a number of years. I believe that this stress may be a crucial component to understanding why I got PMR. I think my central nervous system was overloaded and my bodily systems such as my gut were sending pain messages to my brain when there was not problems (that is a reference to the 4 years of viscera pain (diagnosed as visceral hypersensitivity) that I and no doctors could explain). Eventually my body sent inflammatory compounds such as Interluekin-6 to my muscle-tendon junctures producing inflammation which was diagnosed as PMR. That is a synopsis of MY PMR journey. Everyone has a different journey with PMR. For me, PMR was a wake up call to really do some CHILLING-OUT and address my living perpetually in the " flight or fight" state of being.