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

Good question. While I was very lucky to have my primary physician diagnose my symptoms as PMR, I didn't know that it would take 2 years to cycle off of Prednisone. Perhaps better not to have known!

I was diagnosed with PMR in March and SMM in May. I saw an opthalmologist in April for my annual eye exam and they checked for GCA. I was negative. My rheumatologist checks for it every time I see him. On July 4 I was having pain in my temples and they became very sensitive to touch. I also had jaw pain when chewing and a feeling of extreme tightness at the base of my skull. Fearing GCA, I went to the ER and spent 5 hours being tested for various things. I left with a diagnosis of probable migraine due to prednisone tapering. I didn't know it could cause migraines and I didn't know that migraines don't have to be debilitating. They can have any of the same symptoms that sent me to the ER.

@kjoed53 Since you are on prednisone they cannot Dx GCA easily. The temporal biopsy would most likely be negative. What you outlined are the classic symptoms of GCA so once you get past the SSM hurdle you might want to revisit the headaches and request for a chest MRI. Since you have not needed large doses of prednisone, like 60mg daily, it is unlikely. I was initially put on 40mg with just the Dx of PMR. I went 6 years without a proper Dx.

@jabrown0407
I'm down from 25mg to 6mg prednisone now. The magic number for my hematologist oncologist is 5mg. I'll be there a week before my next SMM blood work. I had a cat scan of my head at the ER. They think it's from the prednisone tapering. The SMM is my priority right now and I won't feel comfortable with that until I have real numbers.

I wish I had known that there is a correlation between Prednisone use and osteoarthritis as I have recently been diagnosed with arthritis of my spine.I wish I had known there is a correlation between Prednisone and dental issues as my teeth have cracked and crumbled .I wish that I had known that there is a correlation between Prednisone and these brown spots all over my arms. I wish that Drs would practice informed consent and if they had in my case I would of made other choices if available, It's a toss up between PMR and prednisone as to which has ruined my life. I am done.

I was diagnosed in May of this year after 3 months of increasing pain in my hips. I'm so new to this that I don't know what I really need to know. My pain is just in my hips/legs but prednisone helps quite a lot. I was started on 20 mg and have decreased to 10 without any significant increase in pain and the plan seems to taper till I can start on Kevzara. I have a couple questions for the group though and would appreciate any insights.
1. I am wondering why I haven't had shoulder pain and if that is usually something that starts simultaneously with hip pain or shows up over time.
2. Given I am tapering on prednisone what should I expect as I continue to decrease: Increased pain? Pain moving to my shoulders? Any other symptoms?
I am seeing my rheumatologist for the third time in a week and will have more input at that time, but it will be good to hear unfiltered advice you have for a newby.

@lhk2 My family doctor diagnosed the PMR in October of 2025 because of severe shoulder and arm pain. He started me on 20mg of Prednisone and sent me to a rheumatologist.
I got relief in 3 or 4 days. The first of December my lower back and hips started hurting with pain so bad I couldn’t walk. The Prednisone had caused osteoporosis and it caused 2 fractures in my back. In January I started the Kevzara shot every other week, with no side effects , to help reduce the Prednisone. In February I had a Prolea shot. It helped my fractures heal. I am now at 7 1/2 mg Prednisone and will have the Kevzara shot at least 6 more months. Monday I go back to rheumatologist and hopefully she will lower the Prednisone to 5 mg. I have been pain free for 6 months. Will be so happy to get off Prednisone, if at all possible.

I wish I had known I have a case of Chronic Lymphatic Leukemia, I beleive it was the underlying cause of my 3 year battle with PMR. Since treatment for the CLL, my PMR symptoms and relief via Prednisone have subsided. Treatment for CLL included infusions whose makeup was determined from my blood tests. After two infusions my CLL markers improved to the point my follow up was scheduled 6 months later.

@p00lman49

Sadly ... this happens way too often. Maybe not CLL but some other diagnosis is the problem instead of PMR.

If it isn't some other problem entirely then it is PMR symptoms that are triggered by something else or PMR symptoms on top of something else. It is way to easy to call everything PMR and throw prednisone at all of the problems. People including some doctors believe that symptoms that respond quickly to prednisone has to be PMR but that isn't always true.
https://bpac.org.nz/2023/pmr.aspx
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It doesn't help when people give their medical advice on the internet. They tell other people to take more prednisone for any pain. This is done sight unseen without a face to face evaluation or even doing any lab tests or other diagnostics.

@wendybfrompgbc
For me, prednisone masked my osteoarthritis. It was there before and it's there now during my taper. While on 25mg prednisone, nothing hurt. My rheumatologist checks my calcium levels as does my hematologist oncologist. Prednisone can deplete vitamins and minerals in your body and should be monitored with your regular blood work.