Surprised and Uncertain: Should I get a second opinion?

I've bouncing between 8 and 6 mg of Presnosine for over a year. Been on Prednisone for a total of 3 years. The worst decision I made ( with the ok of my rheumatologist !) was a little over a couple of years ago, ... before I really understood
how dangerous the steroid was
... I asked if it would be OK if I increased the dose to 20mg during a trip for large wave surfing ... It was concern for both performance and safety.
But I was an idiot and my doctor was worse .... That two weeks over medicated, I believe really complicated the weaning process. Up until recently I was still in increasing/decreasing based on severity and length of flares. For the most part now, I have a "tool box" of practices, herbs, and strategies that for the most part minimize the flares. But I've yet to get below 5mg where I can get evaluated for how much of the cordisol encouraging practices have the body begining to make its own.
I have good days and bad days. But unlike previously where it seemed random, I can usually point to an over activity, diet failure, or stress as the source of the pain,.fatigue, or
depression..

@glinda47, It's not uncommon for a misdiagnosis of PMR. There are a lot of conditions with similar symptoms that mimic PMR.
--- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

This is an easier read for how PMR is diagnosed.
--- Polymyalgia Rheumatica (PMR): Diagnosis and Treatment: https://creakyjoints.org/polymyalgia-rheumatica/polymyalgia-rheumatica-pmr-diagnosis-treatment/

Wow. I am so sorry. I am dedicated to not taking steroids for a variety of reasons. I know some people do well, but I have too many contraindications. If I get GCA, well I'll have to cross that bridge when I come to it.
At least it has helped you with your pain. And that is no small feat.
Tell me, what diet do you follow? I am totally confused by all the diets as they are so different from each other, it almost seems like there truly is no real diet that works for PMR. Some say keto, some same Mediterranean, some say no additives or preservatives (which I try to avoid at all cost anyway.)
I was heavy into working out and in great shape.....now since Jan, if I walk in my basement for 15-20 min, with warm up. cool down and gentle stretch, I pay for it the next few days! Or if I do too much around the house, even a 3 bag trip to the grocery store.
I also have these painful Bakers Cysts behind my knees.
Everything about this is so arbitrary...hard to make plans to do anything.

My research says older folks, especially "elder athletes" need significantly more protein than those younger.
And that your brown beans and leafy greens contribute significantly to healthier tissues.
In the morning I have a large shake made with the full amount reccomended (two scoops) vegetable based
protein powder, bananas, dozen strawberries and blueberries, and water, with
creatine and collagen added.
I may have another shake at some point in the day.
At some point in the day I mix in a bowl, 3 or 4 hard boiled eggs, with a large can of white tuna, an avocado, mayo, mustard, and chopped pickles.
Some mornings I'll just eat 3 hard boiled eggs with the shake and add just one with the tuna.
Sometimes replace the tuna with roast chicken. I'll grab a frozen burrito during the day too. Or a baked potato with Parmesan cheese.
Maybe a fresh picked spinach salad with balsamic dressing.
Now this is my "bachelor grazing" menu. My wife makes a whole range of meals with organic beef or chicken, ... chili, Thai, other stuff that can be stashed in the frig or for an actual dinner.
I lost 60lbs in 4 months when the PMR was bad enough to be diagnosed. I lost not only weight, but muscle development that I'm working hard to recover with protein heavy meals. It's not so much what I eat, as what I do not eat that's important. And as far as some boutique diet philosophy. I don't maintain a diet I can't sustain either in body or spirit.
The challenge for me is to live in the present enough to feel the signals my body is ending me and to learn by trial and error what works for me.
Living in the present has enough individual beliefs and experiences with it, that my version doesn't necessarily speak accurately to someone else.
I have read that in regards to neuroplasticity (changing the brain) .... That our brain under stress can act like a stuck needle on a record player (look it up kids! Ha!) .... Just like when we get really angry or obsessed it hard to stop it from going on and on. So I choose to believe my flares are real, they hurt, they fatigue, and they depress me.... BUT at a certain point the pain/depression response is an echo or stuck record needle, and can be reduced.
But all the mental philosophy is useless unless the body has the proper fuel.

My research says older folks, especially "elder athletes" need significantly more protein than those younger.
And that your brown beans and leafy greens contribute significantly to healthier tissues.
In the morning I have a large shake made with the full amount reccomended (two scoops) vegetable based
protein powder, bananas, dozen strawberries and blueberries, and water, with
creatine and collagen added.
I may have another shake at some point in the day.
At some point in the day I mix in a bowl, 3 or 4 hard boiled eggs, with a large can of white tuna, an avocado, mayo, mustard, and chopped pickles.
Some mornings I'll just eat 3 hard boiled eggs with the shake and add just one with the tuna.
Sometimes replace the tuna with roast chicken. I'll grab a frozen burrito during the day too. Or a baked potato with Parmesan cheese.
Maybe a fresh picked spinach salad with balsamic dressing.
Now this is my "bachelor grazing" menu. My wife makes a whole range of meals with organic beef or chicken, ... chili, Thai, other stuff that can be stashed in the frig or for an actual dinner.
I lost 60lbs in 4 months when the PMR was bad enough to be diagnosed. I lost not only weight, but muscle development that I'm working hard to recover with protein heavy meals. It's not so much what I eat, as what I do not eat that's important. And as far as some boutique diet philosophy. I don't maintain a diet I can't sustain either in body or spirit.
The challenge for me is to live in the present enough to feel the signals my body is ending me and to learn by trial and error what works for me.
Living in the present has enough individual beliefs and experiences with it, that my version doesn't necessarily speak accurately to someone else.
I have read that in regards to neuroplasticity (changing the brain) .... That our brain under stress can act like a stuck needle on a record player (look it up kids! Ha!) .... Just like when we get really angry or obsessed it hard to stop it from going on and on. So I choose to believe my flares are real, they hurt, they fatigue, and they depress me.... BUT at a certain point the pain/depression response is an echo or stuck record needle, and can be reduced.
But all the mental philosophy is useless unless the body has the proper fuel.

TYPO: not a " dozen strawberries "..... "Frozen strawberries "!

Thanks so much for bringing the use of US into my knowledge base. I wish the technology forums I use had participants as invested in expanding the common community good as much as this one! I'm going to be a little more careful about pronouncing my own experience into generalizations!
So is the UV able to discriminate between injury, PMR, other rheumatical conditions, and just plain old temporary stif and soreness from over doing it at some exercise or activity?
I am still able to participate in my favorite activity (surfing) and I still train with exercise and weights to maintain strength and flexability.
And I am convinced (at age 73) I can tell the difference between significant soreness / stiffness and a PMR flare.
But thank you. I went and used the AI app CoPilot to look up the uses of both US and the blood tests Sed Rates and C-reactive protein .... and it confirmed the info on UV of course, but I found I didn't even clearly understand how the blood tests are used.
Information is empowerment,
Thanks!

Hi @stevieb, I had symptoms of PMR and GCA about a year and a half before diagnosis. The PMR was unrelenting pain and stiffness from the neck down that no amount of exercising or physical therapy ever helped. Then I got a host of other symptoms. A temporal artery biopsy was positive for GCA, I started with 40 mg prednisone and tapered off it after a year and a half.
I was good for a year, then about 6 months ago, my neck got stiff again. I did lots of exercises, range of motion was okay, but it hurt to turn my head. Pain went up my head. At this time I learned I need a shoulder replacement. I figured my bad shoulder was causing imbalances throughout the rest of my body. I also thought the head pains were from my neck so kept doing targeted exercises, without any significant relief. Then I got other symptoms: itchiness, no rash, faintness in the morning, anorexia, tender scalp, loss of weight, dry cough and malaise. The last head pains were really bad, compression-like, the feeling my scalp was pulled so tight.
I suspected my old friend returned, requested a CRP test, and it was elevated. Now I'm back on 40 mg prednisone. My reaction to it is different this time. No euphoria, pain is gradually easing up, but malaise is gone.
I wonder how I could go six months minimizing the neck and head pain and not suspecting the return of GCA. One clue from the past should have been that the pain of PMR and GCA does not respond to exercise or physical therapy, because the vessels, arteries, etc. that carry blood are compromised by the immune system attacking them and blood just doesn't flow to the afflicted area (in crude lay terms).
So, I just learned another lesson about this disorder, which hopefully, will help me and others to recognize symptoms of a relapse in the future.

Wow. So many aspects of this that are totally new to me (GCA especially).
I agree, traditional exercise when a flare kicks in doesn't provide overt results for me.
But certain stretching, and soft yoga positions does relieve the aches to some extent. I also use a specific strain of kratom (super green Malay from Mitragaia). I try my best to be active to maintain my body in as efficient condition as possible, more as a preemptive deterrent rather than a post flare fix.
My main distress is the weakness, fatigur, and depression than in an outright pain. (after joining this forum I understand how fortunate I am). It could be my practice I've chosen or could be just that's the way it is.
I do know when I am in that weakened, depressed flare state, the "PMR tells me to curl up in a ball on the floor and don't move", but if I ignore that, go outside in the sun, and move around minimally, .... I feel better.
I do see that many of us absolutely require overt medical treatment and
medicines to maintain some semblance of functionality.
As my wife the Acupuncturist says "if I'm in a carwreck, don't call an Acupuncturist, call an ambulance! ".
I'm constantly having my perspective widened by folks in this forum, who have taken on so much more than myself for so much longer.
When I am suffering just even a little bit of improvement in quality of life is significant.
Apologies! I kind of slipped off-topic! But thank you! That's valuable for me to hear, as I am definitely not "out of the woods" yet!

Hi Kate,
I am unable to take steroids, but there are other things to try. I'm glad this worked for you.
I had blood tests last month that showed normal range inflammation markers along with other labs that were also within normal parameters. In a few weeks, I'll be seeing my GP for annual checkup and will ask for these to be checked again along with CBC and other measurements I like to have reviewed.
Thanks and best health to you.