Hi @dmoonchild, autoimmune diseases, like PMR and GCA, are notorious for being troublesome to diagnose. You only have to see these related discussions to realize that you are unfortunately not alone in your pursuit of a proper diagnosis and how to get one.

- Is everyone here diagnosed with PMR seeing a rheumatologist? https://connect.mayoclinic.org/discussion/rheumatologist-1/
- Do I really have PMR? https://connect.mayoclinic.org/discussion/so-i-really-have-pmr/
- PMR initial diagnosis: Can there be an underlying disease? https://connect.mayoclinic.org/discussion/pmr-initial-diagnosis-1/
- Were you misdiagnosed with PMR? What was your diagnosis?https://connect.mayoclinic.org/discussion/misdiagnosis/

I'm sure @pickle7 @tsc @novabill @marilynredder2367 @milld835 @susan63 @microbe1943 @lmoross and other members can share stories and tips with you too.

Moonchild, did your new doctor explain why she/he took you off your medications or explain that they ruled out PMR and why? Did they tell you what they think is going on and why the referral to pain management?

Hi @moonchild, I suffered with PMR (pain on a scale of 10 out of 10) for four months, full blown and my inflammation markers, ESR and CRP, were only slightly elevated so I wasn't diagnosed. I then got terrible neck stiffness, scalp tenderness, short little stabbing pains on the side of my head, anorexia and anemia. Nine months after the first blood work my ESR and CRP were off the charts. I had a temporal artery biopsy and was diagnosed with Giant Cell Arteritis and put on 40 mg of prednisone. I'm down to 1 mg now.

Were you ever prescribed prednisone and did it help? Usually the dosage for PMR is 15 -20 mg and the relief is often described as "miraculous." The dosage for GCA is higher. It's serious - untreated it can cause stroke or blindness. Have you had problems with your jaw when eating, unable to chew, or difficulty seeing? Has any doctor ever suggested a temporal artery biopsy?

If symptoms don't respond to prednisone, it could be an infection, malignancy, connective tissue disorder or hypothyroidism. I got this information from a diagnostic algorithm for PMR from Cecil and Goldman's Textbook of Medicine.

I hope you get some relief and find some answers soon.

Sorry you are going through this. I was in pain for a year with nothing showing up in blood tests. And then they did show up. My numbers were so high and my husband, who is an Ophthalmologist, was extremely concerned about my eyes. This has been a roller coaster ride that I can’t seem to get off. Make sure you are In good hands and always good to get a second opinion.

Hi, Moonchild. I hope by now you have a new Rheumy , please don't give up. I'm a little confused by the timing you mention since Aug 24th hasn't happened this year yet. But all that aside, we know that we wish Medicine was a Science but in truth there is a large amount of Art to it. It took me 4 yrs. and 2 Rheumies to get diagnosed. I wouldn't settle for just a pain management doc myself but if you found one that could see the big picture, maybe they could help. I found myself telling everyone remotely involved with medicine my story in hopes for insight. You have our support to be noisy and keep looking for answers. It's your life and your right.

thanks Teri👍

Possibly you need surgery in your temporal artery to check for GCA