I can definitely relate to the stress of seeing doctors, especially new providers. The cumulative effect of medical appointments that went south has been traumatizing, so it doesn't sound silly at all.

Because I feel that way, I try to ask myself if it would be worth the stress and a potentially triggering situation to gain information that might help me move forward--sometimes the answer is it's worth it, sometimes not, and sometimes when I didn't feel ready I changed my mind eventually. The exception of course is if it turns into an urgent situation--the trick is figuring it out before it gets that far.

(Full disclosure: My dad has PMR, but he had a severe stroke, so I am a primary caregiver. But I have chronic pain myself as well.) I do agree though that with PMR in particular (I have fibromyalgia also but I've found more help with it on my own and with specialists outside of rheumatology) it's best to work with a rheumatologist. I wouldn't be able to help my dad without her, and I wouldn't have made it as far as I have without my own rheumatologist.

It might help save you from unnecessary pain or developing chronic pain--the longer someone is having pain and if it's not treated well, the more likely it is to last longer or develop central sensitivity (where your brain gets basically primed for pain even if situations that previously weren't painful) or other complications. That's what happened to me when it took too long to identify and treat my inflammatory arthritis. It's good you're keeping it in mind as an option for when you're ready though.

But to your practical question about predinsone, if you're having breakthrough pain that's lasting for more than a few days after dropping the dose, in our situation, that meant that my dad either needed to go back on the higher dose for a little longer until he could be functional again (we prioritize quality of life, and with the stroke and rehab, he's not equipped to implement a lot of other coping mechanisms for a PMR flare, even a small one), before trying to taper again and/or it meant we had to taper more slowly. Some people can taper more quickly (2.5 mg, like in your case), and others need to go even slower. For example, we've alternated 15 mg and 12.5 mg for 2 weeks, before dropping to 12.5 mg every day. Or tapered by just 1 mg instead of 2.5 mg.

As I understand it, the prednisone is the first line of treatment for the inflammation, but it can also mask a bunch of other symptoms and make you feel good even if PMR inflammation isn't the problem. It can be hard to pick apart if the pain is from PMR or not. Because of that, my dad's rheumatologist always runs labs before we taper, so we're not doing it blindly. (If you're not doing it now, the up side is you might be able to ask your doctor's office for lab orders without having to meet with them, as long as you're okay with blood draws 🙂

I hesitate to call anything a "cure," but PMR can go into remission--I prefer to say "remission," because there's always the specter that it could recur.

But hope it helps to hear one family's experience, and wishing you all the best.