Small Dose Prednisone Therapy

Im not a Doctor but have a basic understanding of biology. As i understand it, PMR is caused by the immune system going into overdrive and attacking proteins that it shouldn't be reacting to. This leads to a pain sensitization feedback loop. Prednisone blocks the inflammatory response while you are taking it and blocks the pain sensitization loop. In a small percentage of PMR cases this reboots the immune system and can send the disease into remission but for most people Prednisone is just a bandaid and underlying causes of inflammation (which havent been clearly identified by science yet) continue to cause problems. Is this your understanding?

My Rheumy was quite clear in stating that PMR is very debilitating but doesnt do any actual damage to joints and muscles. The damage is done by avoiding movement due to the pain experience. Prednisone takes away the pain by dampening the inflammation but causes a lot of damage and often doesnt 'reboot' the immune system in a sustainable manner.

You should keep an eye on your blood tests. Ask the Dr for copies and where to look for ESR and CRP results and what is normal. You may have a relatively low level of inflammation and the Dr doesnt want to slam you with high dose Pred and set you up for unnecessary problems trying to get off it.
There are a number of conditions that can mimic PMR and may not require Prednisone and if your inflammation levels are increasing, there are a lot of things you can do to help control it. Lots of research needed !!! Good luck.

Thanks Emo. I want to avoid steroids at all costs due to already having all the side effects associated with it.
There has been little research on PMR ergo pred remains the go to and works well for most people who can tolerate it. I'm also turned off by the fact that docs don't do enough digging and looking for possible infections or other reasons for this condition and just throw pred at it. I would also have to take osteo infusions and that's another group of drugs I can't tolerate.
Tell me, now does PMR put one in danger? Thank you.

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.

You’re right; your situation does sound like PMR. May be worth at least setting an appointment with a rheumatologist (since that can take a while) and get their take on it. There are other medications for PMR, but prednisone is the first choice like we’ve all been talking about.

My dad was well (relatively so for his age, in his 70’s). We have a huge vegetable garden around our house, he mowed the lawn, plowed the snow, cooked almost every day, etc.

PMR was either a slow burn, or he had just started taking statins at the time, so what began as his mild muscle pain was thought to be a side effect of the statin, until even after stopping it the pain got drastically worse.

Either way, the diagnosis was bungled in our opinion. It’s one thing to get it confused with the statin situation, but after his ESR and CRP labs went through the roof, I was able to diagnose it from Google. But his PCP was clueless and about to refer him to a hematologist for however long that would have taken. Even after we raised the issue of PMR, he was skeptical.

I feel despite it being common, it often gets overlooked because PMR affects seniors and their pain and fatigue is dismissed.

Thanks for your kind words. We are doing our best. Unfortunately a stroke is permanent. It’s not helpful to second guess what happened but it’s hard not to wonder how things might have turned out if he had been diagnosed immediately instead of in 4-6 weeks and assessed properly for GCA.

I do hope you find a path forward that works for you, regardless of what that looks like.