PMR with normal blood markers

I was very reluctantly diagnosed with PMR a year ago, despite normal ESR and CRP tests. (These are the two they look at to see inflammation-they are NOT specific to PMR; only to inflammation.) if they are not raised, most doctors are skeptical. A rheumatologist refused to see me when my PCP referred me because my markers were not raised. Despite this, I had a classic case of waking up one day with overnight, extreme stiffness and pain in my neck shoulders and hips. My PCP reluctantly prescribed 10 mg of prednisone and I was almost back to normal within 24 hours. Up to 20% of PMR patients do not have elevated markers. If you do some Google research you will find articles that clearly state this. To make a diagnosis in the absence of elevated markers, a course of prednisone is given, and if your body responds to it, the diagnosis should be made. (This is in the medical literature.) I had to arm myself and advocate for myself by doing my own research and taking it to my doctor.

One last thing. I just read an article that said that another pointer to inflammation is high neutrophils/low lymphocytes, so ask about that too. I ALWAYS get copies of my labs, straight from the lab. You can usually sign up for a portal online for easy access, or go pick copies up from the lab.

Best to you. Be your own advocate.

yes, I'm in the same boat. my sed rate and CBC and C-Reactive tests have been normal or close to normal but I had ALL the PMR symptoms. Google Bard tells me that roughly 20% of us have negative blood tests but still have PMR.

One key component of inflammation not usually tested or covered by insurance is Interleukin-6.
It can be drawn at leading
reference labs if you are willing to self pay. It is usually
elevated in PMR. You do not need a physician to order the test.
Hope you can consult a more
open minded rheumatologist.

It would have been interesting if my IL-6 level was checked before starting a biologic medication which blocked my IL-6 receptors. The medication was called Actemra (tocilizumab).
https://www.actemra.com/gca/considerations/how-it-works.html
After 12 years of taking prednisone for PMR, I assume my IL-6 level was elevated. After starting Actemra, I was able to reduce my prednisone dose to zero. On the other hand, my ESR and CRP levels were almost always elevated even when I was on prednisone. I guess there was no question about me having systemic inflammation so there wasn't much need to check IL-6.

Since our treatment is currently dictated by the diagnosis we get ... maybe it would be better to target the inflammation pathway rather than the diagnosis.

Tammy S., I had the same experience as you--no inflammatory markers and only pain in my arms and thighs at night in bed. No pain when I got up! I started with 10 mg. Prednisone, as well, and tapered off in about a year. It flared up again when I got COVID and had to go back on 2 mg. I've been off Prednisone for months now. BTW, my PMR started after my second Pfyzer COVID vaccination.

I was diagnosed with PMR. I started out with 30mg prednisone and felt like a teenager. I had absolutely no pain in my hips/legs or stiffness. Like you, my C-Reactive and Sed Rate was not elevated. When I had my dose reduced to 20 mg, the pain immediately came back. At that point I asked for a referral to a rheumatologist in Rochester/Mayo. He said I had been misdiagnosed and immediately put into action a plan to decrease the prednisone gradually. Unfortunately, the devastating effects of a year on prednisone caused me to h@ve multiple compression fractures and osteoporosis of my entire lumbar spine. Now I am in constant pain.

One always needs to be their own advocate…and responsible for their own welfare …I too find keeping track of my own lab tests helps understand the direction my Dr takes with medications etc..I have no normal marks either but have a very high AST …I’ve had this years before I was diagnosed with PMR and despite many tests have not found the cause of it…anyone else have this peculiarity?

That’s a test for liver damage. Is your doctor aware? Maybe further testing needed?

I’ve had two liver biopsies and am monitored regularly …still unable to find cause …but levels of ast have not changed in some 10 yrs …even with the addition of Methotrexate injections in the last 10 months

I’m about to be put on Actrema. Unfortunately along with a year long journey with PMR I was just diagnosed with GCA last week. I was put on 60 mg of prednisone and will be starting at trauma before long. I’m nervous about all of it. They are doing MRIs and MRAs of my head and neck on Thursday and then I will be having CT scans of my chest and abdomen to check those arteries for inflammation.