That’s understandable. Apologies for the delayed reply. I agree it’s frustrating treatment options are limited seemingly because no one is researching it. I have several intertwined chronic conditions that are like that but don’t have an established “go to” treatment, so in a weird way, it was somewhat a relief that my dad’s PMR did not have to involve various trials of medications over months to identify the correct medication.
I’m a patient and caregiver so can’t say with 100% certainty, but it’s my understanding that untreated PMR would be unlikely to be life-threatening, but there’s still the risk of developing GCA, which does have severe risks. Then there’s the potential effects of the inflammation.
I did find this on Medscape because your question made me curious: “Untreated patients often feel unwell and have an impaired quality of life, but generally, PMR is not associated with serious complications.”
To your point, the next sentence is: “ Patients treated with corticosteroids are at risk for long-term complications of corticosteroid therapy.”
https://emedicine.medscape.com/article/330815-followup?form=fpf#e1
In my dad’s case, he had the debilitating fatigue and pain that’s indicative of PMR, such that he couldn’t get out of bed. I don’t even have words for how terrible he looked. He couldn’t walk, could barely make it to the bathroom, or even sit up in bed. He had headaches, light sensitivity, and fever. Forgoing treatment was absolutely not an option, and I doubt OTC medications, supplements, or lifestyle changes would have made a difference. He was sick for at least a month before he was even diagnosed correctly, which may have resulted in such severe deterioration of his physical function.
Most people I’ve met through this group or in talking to my dad’s doctors have PMR pain that’s severely limiting.
I suppose like most things, it comes down to a personal choice and a quality of life decision. If you and your doctor are certain it’s PMR (as others mentioned; there are a lot of “mimics”) and you don’t feel your quality of life is severely impacted without treating it with prednisone, then or may not make sense to treat it, at least not that way.
Are you certain of the diagnosis?
So sorry about your dad. Sounds like either his overall physical condition or some other issue(s) was partly responsible for his pain and ill feelings. Was he ailing before PMR?
How did he feel after taking meds??
Thanks for the article. Kinda can't win either way with the side effects of pred or the scariness of untreated inflammation, not to mention pain. I have to do something more than 1 Advil a day for the pain, that's for sure. Of course, all the scary ibuprofen info online doesn't help. And docs are so afraid to ok it.
Either way, I'll be asking to have a list of labs checked on a 3-4 month basis, including markers, CK (CPK), kidneys, liver, maybe a few more.
No, I have not been formally diagnosed but I would say I'm pretty much a poster child for PMR. It started slowly as I said, I believe, in an earlier post, with pain in both thighs. I thought for sure it was overexercise. Then my rotator cuff, which always hurts due to lifting, began to really flare. I honestly don't know if it's pmr, injury or both. Hoping the US will show what's going on with that and if I need to treat it, I will. Hope I don't need surgery.
Thanks for your thoughtful and informative response.
Hope your Dad eventually got better.
Take care.