PMR - What do you wish you had known . . .

Welcome @karenel, I don't think you are alone with not knowing much about this nasty condition that a lot of us found on our plates at different times in our lives. It sounds like you have a good healthcare team to help you deal with PMR. There are quite a few really valuable discussions here on Connect in the PMR Support Group. You might want to scan through the group to see if there are others you would find helpful. Here's a list of the discussions - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

Three months is fairly early in your journey with PMR. Have you discussed any prednisone alternatives with your doctor or rheumatologist?

I wish I had known about the anti-inflammatory diet. I eliminated salt as soon as I started prednisone. At seven months, I eliminated processed foods and sugar. It seems sugar is my inflammation trigger as after two months on the anti-inflammatory diet, I have no pain and very little stiffness.
However, I have remained at 5mg prednisone for 10 weeks and my last-month and this-month lab results show my CRP and ESR high (CRP 2.38, 4.57 and ESR 43, 53) indicating that I have inflammation. My rheumatologist does not know why I feel so good.

@mlz
It can be impossible to distinguish between PMR pain and wear and tear arthritis pain, or pain from anything else but the PMR. I have arthritis of varying degrees in all my joints, but the most severe is in my cervical spine, along with spondylosis and stenosis. The pain from that can radiate to my shoulders, with a lesser chance that it could even affect my lumbar spine, hips and lower extremities. I also have SMM. My hematologist oncologist doesn't think the SMM is causing pain yet, but my rheumatologist isn't convinced that something else is not affecting my shoulders and causing pain. Try not to worry too much about what may happen. Stress, worry and anxiety can be the cause of many health issues if you allow it to become a factor. Trust in your doctors and good luck with your surgery!

@kjoed53
Hi,
I'm so grateful for your kind reply and health/illness transparency. Just when I thought I was at the pinnacle of illness and symptom confusion, I hear from you about your SMM. Thank you so much for giving me a reality check. You may not have intended that, but I really needed to have one.

@mlz
You're welcome, I'm glad you were able to make sense of my ramblings and that you pulled something useful out of it. We're all on the same road, just in different lanes.

@pmrsuzie My PMR showed up in April 2019 and I went until March 2020 before I received the PMR Dx. I have started prednisone and tapered successfully multiple times and each time the pain returns after the taper ends - within 30 days. This tells me my body has not gone into remission.
In Sept 2025 I went to a leading out of state teaching hospital that Dx asymptomatic GCA. I do have some aorta damage and am now being watched by appropriate specialist. My treatment plan has changed as well.
If you cannot taper successfully it may be because you have more than PMR at play. Please push to be reevaluated since PMR is known to burn out in a few years.

@pmrsuzie

January 1, 2019 was the day that I self administered my first injection of Actemra (tocilizumab). I tapered off prednisone about a year later. I took prednisone for 12 years prior to 2019 so it would be hard to say my taper wasn't slow enough.

I wish I would have known about all the pitfalls of prednisone tapering when I was first diagnosed with PMR in 2007. I could have spared myself a lot of time and effort trying to taper slowly off prednisone. According to the following link the problem was recently given a name --- glucocorticoid-induced adrenal insufficiency (GIAI). I think this side effect of prednisone was known but people chose to ignore it in favor of a slower taper or simply staying on low dose prednisone forever.
https://www.ccjm.org/content/91/4/245
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Tapering off prednisone in less than 2 years when IL-6 inhibitors are tried makes me think PMR can go into remission within 2 years. When prednisone was considered to be the only option it took me longer. I belatedly learned that adrenal suppression was probably the main reason why I could not taper off prednisone within 2 years.

I had a hard time getting under 10 mg and relapsed whenever I reach 7 mg. I didn't know my adrenals wouldn't start to recover until I reached 3 mg and my rheumatologist never told me that. I had to be referred to an endocrinologist to get that information. However, a nice person who had an adrenal crisis also said trying to taper off prednisone would be frustrating after the adrenals are suppressed no matter how slowly I tapered. In fact, she thought some of my symptoms which I called a "flare" or a "pain crisis" might have been an impending adrenal crisis.

Anyway ... there were many things I didn't know when PMR was first diagnosed. I still don't know how a person knows how to distinguish PMR symptoms from adrenal insufficiency other than having a cortisol level checked right before discontinuing prednisone.

I learned that 'following the taper schedule and be done', doesn't always happen. No predetermined tapering schedule worked for me. However, my brother-in-law did exactly what his doctor told him and was off prednisone is less than a year. I was ready to tell him to taper slowly but I had to ask him how he tapered off so quickly.

You never know enough starting out with PMR. There is still many things I don't know almost 20 years later.

@jabrown0407
I see a cardiologist yearly, used to be every 6 months. In April 2025 I had an echocardiogram which only showed some minor problems. No aorta damage was mentioned.
I will research asymptomatic GCA. My rheumatologist seems to be on the lookout for GCA. He knows I am concerned about it. Thanks for your concern, I see rheum in August.

@pmrsuzie I have had an echocardiogram annually since 2019 when all this started. To this day no aortic problems show up, so please do not assume it is the gold standard to see an aortic issue. Mine was first seen in a PET scan that was used to Dx the GCA and later confirmed and detailed in a thoracic MRI with and without contrast. I have also had an MRI without contrast of the head and neck where additional vascular damage was identified. I certainly don't mean to alarm you however I never imagined that I could have GCA without a single cranial symptom. Actually, my local Rheumy struggled with the Dx initially. Had I not travelled to a major medical center I do not believe this would have been identified to this day. The interesting twist in all this is that my local Rheumy works for a well-known major teaching hospital in my community that does consulting just like the center I travelled to.

@jabrown0407

I was told that I had a "tortuous aorta" but I don't experience any symptoms. It only bothers me that I have a tortuous aorta. They shouldn't have told me that I have one because there isn't anything I can do for it.
https://my.clevelandclinic.org/health/diseases/tortuous-aorta
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I get an annual CT-scan of my abdomen to monitor things that also are not causing me to have any symptoms. They can see other things that are abnormal but I don't have any symptoms. I have decided that I am normally abnormal.
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Now I take an expensive medication to treat PMR except I no longer feel like I still have PMR. My doctors always ask me if I have any symptoms of GCA and that really bugs me. I tell them I probably won't know if I have GCA unless they tell me that I do. My face and head are mostly numb so I don't feel much of anything that is normal. I only have abnormal facial sensations. I also have visual disturbances but that has been explained too . At least I know why my head and face are abnormal and why I have visual disturbances so that settles that.