Do I really have PMR?

My theory of the return of PMR (after 30 years) was the abrupt loss of steroid in my system. I had had a bad Crohn's flare, and had been on 40mg of pred and 9mg of entacort. (Budesamide) This is a topical steroid you take internally for the small intestine and theoretically it only gives you 10% of the dose systemically. But in my case, I had a very inflamed small intestine and I think I absorbed more than that. So when I tapered, it was off the pred first (and I felt no letdown when I got off) and then the entacort, which is in 3 mg capsules. You can't really taper, and I felt a big let down when I was done. I think I should have reversed the removal. My PMR symptoms started right after I was done. I really wonder if it would have been different had I done it more gradually.

We know it is possible to have normal inflamatory markers and PMR . There has to be some sort of inflamation or the pred wouldn't work. That's what it does. I would think your other ANAs were tested also? My SSDNA was 10x the normal high but everything else was normal or close to normal. My sed rate and CRP were just a little high. I think it totally confused my 1st rheumy. Labs can be clear or confusing.

This is a good question related to Covid infections and vaccinations. I can't imagine that with all the research into Covid that no one has found anything related to PMR incidence. Does long Covid cause increase SED rate or increased CRP or is treated with prednisone? I have not heard this mentioned so I do not think there is any relationship between PMR and Covid or Covid vaccinations.

There appears to be mixed conclusions regarding this issue, but the below links reflect studies which suggest a link between infections and PMR.
https://pubmed.ncbi.nlm.nih.gov/8838518/
https://pubmed.ncbi.nlm.nih.gov/32476679/

Please talk to your doctor about trying Low Dose Naltrexone for your pain. It might help. There is loads about it on the net and YouTube. Also, MSM which doesn't require a script , is good for lowering at least one of the cytokines responsible. Look it up, too.

I've never had elevated inflammatory markers and only had pain in the early morning hours while in bed. The first rheumatologist diagnosed PMR and put me on 10 mg. prednisone, which stopped my pain at night. (BUT prednisone is a potent anti-inflammatory, so will decrease pain from other sources).
The second rheumatologist thought that I never had PMR and it could have been cervical radiculopathy, so I had an MRI to diagnose that. Yes, I have some evidence of it, but that doesn't explain why both my arms and thighs would ache at the same time. I was finally able to wean myself off of prednisone after about 1.5 years, but recently started taking 3 mg. again due to a flareup after having COVID. BTW, my PMR started after receiving my second Pfyzer COVID vaccination. Also noteworthy is that I am a registered dietitian and eat a nutrient-dense, whole foods organic diet, along with tumeric and omega-3 supplements. My advice is to eat as many anti-inflammatory foods as possible and avoid processed food as much as possible.

Not having elevated inflammation markers is hard to explain. Some doctors think that elevated inflammation markers are a necessary criteria for the diagnosis of PMR. However many people are still diagnosed with PMR symptoms but do they actually have PMR? I don't know the answer to that question. My personal opinion is that it is possible to have PMR with normal inflammation markers.

I think about things like a sliver which can be very painful when it is in the wrong place. In another place it isn't painful at all. The body will generate an immune response in an attempt to get rid of the sliver The inflammatory response isn't likely to cause too much inflammation so your inflammation markers aren't likely to be elevated but it still hurts. Then again it just depends where the inflammation is that determines how much it hurts.

Inflammation levels do increase while sleeping ... that part is understandable. I doubt many people with PMR will rush to the lab and get their inflammation levels checked in the middle of the night. People in the hospital experience more inflammatory pain during the night and do have their inflammatory markers checked. During the day, their inflammation levels return to normal.

Sleep and the immune system complicates things. Diet is very important but so is sleep!
https://thesleepdoctor.com/physical-health/inflammation-and-sleep/

Could it be electrolyte imbalance? My PMR pain is similar to all over body extreme cramping, unbearable but it gradually reduces with stretching each limb. My blood saline level was 130 but GP did not take any notice saying I need to take hi dose prednisone which I refused because my bones are already thin, have poor sleep and I don’t want to develop diabetes like happened to my late husband.

The second of these references I find especially interesting. Compared to descriptions from others here my case seems to be mild. Perhaps it resulted from a trigger. And perhaps that trigger might have been COVID-19. Just today I read that a prime symptom of the Omicron strains is myalgia (I had never heard that before), and the Zoe app suggests that the musculoskeletal manifestation, when it is present, is severe on shoulders and legs and lasts 2-3 days. Five weeks ago I had a severe, debilitating pain and stiffness in my arms and pelvic area. It went away 3 days later. Not having heard that this could be a sign of COVID (I had no other symptoms, and was not aware of being exposed), I didn't take a test. A week after that, I developed shoulder pain that my excellent internist diagnosed as PMR, upon seeing an elevated CRP reading. I have been on 20 mg prednisone since and the pain is under control (1 out of 10). I have no doubt that the doctor was right about PMR. What I am wondering is whether or not this PMR is different from any other kind, since it could perhaps (who knows?) be subsumed under "post-covid syndrome." Should it be treated the same way? I read that prednisone is contraindicated (in UK) in some myalgia. It's too early for studies about this, but I'm curious to know if anyone else has had the experience of short-duration heavy body pain followed in a week or so by PMR.

Like you I was put on 20 mg prednisone and the pain decreased substantially. But bc my CPR and SED rate weren't very high my rheumatologist isn't sure it's PMR. So I am scheduled for a MRI of my cervical spine later this month. Still taking the prednisone bc if I don't I wake up in severe pain in my arms.