A Bizarre Change in Condition

I'm not sure what helps me, Plaquenil and LDN. Down to 3.5 mg after 16 months. My initial pain was completely disabling.
But I also had an abusive appt with a rheumatologist, then he wrote a secret note to my PCP, trying to make me look like a nutjob and lying about what he told me! He refused to even evaluate me for PMR, since I thought of the diagnosis myself. Mind you, I never needed a rheum, my husband and daughter are both Internists . It was my new PCP who has never seen PMR and refused to accept the diagnosis of my semi-retired husband.
Hiding notes from patients is flat out illegal and if they don't produce it within 60days, I will report him to HHS.

I’m so sorry for your awful experience you had with that rheumatologist!!
Sometimes you need to see what qualifications the doctor has and where he went to school,etc.
Over forty years ago I had a PCP, an internal medicine doctor who was getting close to retirement. He was educated at Loma Linda University and med school and was absolutely the smartest doctor I have ever had. He diagnosed my Reactive (formally known as Reiters syndrome) Arthritis before a rheumatologist saw me and confirmed it! It was a big deal then cause mostly men get this, only 2% women get it!
Another good trait of this doctor was that he listened to me—I was in the medical field and had a tendency to diagnose myself😂, but he listened and did all the appropriate tests and some of the time I was right, lol.
I do understand your frustration in finding a doctor who will really listen to you and make that extra effort to help you! I really hope you find a good one—maybe a specialist in auto immune disorders—maybe you can get a recommendation through the Mayo Clinic?
I also have osteoporosis and they have me on an IV infusion called Reclast. It is a 15 minute infusion you get once a year for about 5 years. They tried the oral medications on me and I had horrible GI problems with it. No bad effects from the IV. You might want to check into it after you get all your other stuff taken care of!
Good luck and best wishes!

I'm not sure what helps me, Plaquenil and LDN. Down to 3.5 mg after 16 months. My initial pain was completely disabling.
But I also had an abusive appt with a rheumatologist, then he wrote a secret note to my PCP, trying to make me look like a nutjob and lying about what he told me! He refused to even evaluate me for PMR, since I thought of the diagnosis myself. Mind you, I never needed a rheum, my husband and daughter are both Internists . It was my new PCP who has never seen PMR and refused to accept the diagnosis of my semi-retired husband.
Hiding notes from patients is flat out illegal and if they don't produce it within 60days, I will report him to HHS.

I have learned a lot about communicating with doctors in the course of my PMR, the first significant illness I have had at 74 so I have not had much practice. I diagnosed myself with PMR after my PCP said my pain was spine-related and sent me to Pain Management. I had all the classic symptoms but only one of my inflammatory markers was only mildly elevated. I went back to my PCP and didn't tell her my conclusion but just stated all the symptoms that were classic PMR and left off a few that I thought were probably spine-related and just confused the issue. She said, " You have PMR". Doctors like to come to their own conclusions. They also don't like to be given too much information at once. I try to keep it as simple as I can. She gave me a rheumatologist referral but I couldn't get in for 4 months and she did not want to start prednisone. I got worse and called in and left a message with the assistant: I have 3 issues: I can't see the rheumatologist for 4 months, I am spiking fevers, I have a headache at my temple. I got in the next week since they suspected GCA. I was pretty sure the headache was related to the fever and not GCA but I did what I had to do to get taken care of! It helps a lot to have a medical background but the internet can fill in quite a bit. Sandmason, this is not meant as a criticism of how you handled your doctor interaction just my 2 cents about avoiding negative doctor interactions and getting what I am pretty sure I need.

First of all, lucky you that you have not had any real health problems. Awesome stuff.
I have been pretty lucky myself with a few bumps in the road, but mostly quite well and very active.
I have very much the same philosophy as your with docs. Give them the answer and they'll take it. Keep it simple. I hide my list of questions/information under my leg so they don't see it. Apparently, they don't like lists.
Tell me, did you have GCA? Also, what did they do for you? Steroids? How are you doing now?

They ordered the biopsy and I did not have GCA. I was put on prednisone 20 mg and could feel it working within 6 hours. I could actually life my arms in the air and wave them around! Wow. All symptoms were gone within 48 hrs. It's been almost 3 years on prednisone now, a trial of methotrexate and now Kevzara. I couldn't get below 8 mg prednisone for a long time but now tapering and at 5.5., soon to 5.I have some bad days but am hiking, riding my bike, gardening, just less than before PMR. I feel pretty good and if the Kevzara just helps me go lower on the prednisone I'll be happy. I have minimal prednisone side effects, will wait to see what the Kevzara is doing to me when labs are done next month. Hope you are doing well!

Advil etc just doesn't work with GCA or PMR. Really, only Prednisone and Actemra work. Prednisone sucks big time but..... at least it takes away the pain above certain dosages. I was diagnosed about 9 months ago. Trying to deal with my complete life change