Does PMR go away permanently?
I’m newly prednisone free and oh boy I am sore and miserable but I think I can do this. I sole-speak to myself constantly saying, “Come on body let’s reset”!! Now I’m reading it doesn’t go away but only goes into remission. 😭
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I believe two things are in play for contracting PMR -- a genetic propensity and an environmental trigger that activates it.
As to why this only happens when we are older, I have no theory. But I suspect it has something to do with the body fighting inflammation on more fronts as life catches up with us.
So no, it doesn't go away, in my opinion. You still have the propensity for it. You can only control environmental factors that may be causing inflammation.
My first round of PMR was at 54. Took a couple years to get it under control. On top of that, went through a fusion of vertebrae in my neck (hazards of an Army career) and then quad tendon repair (hazards of taking prednisone that damages muscles and tendons).
But by 60 was feeling good. Worked on trails in the woods. Backpacked 400+ miles through Italy, ran (a slow) half marathon.
All good till I took up kickboxing exercises, which constantly inflamed existing bursitis in my shoulder. Of course, I didn't stop doing it and ignored signs of over-stressing my bodies ability to control inflammation.
Welcome back PMR at 63. At least this time I knew how to handle it. Restricted diet with increased protein. Regular low-stress exercise (mostly hiking, rucking and a little trail running as I feel better). Physical therapy. Tai chi. Acupuncture. Chiropractor. Everything I can think of to reduce inflammation in every part of my body.
Working hard to get off prednisone, which is its own kind of evil that sneaks up on you. Taking Kevzara injections to help with that, which seems to be working. Down 2.5mg and tapping every two weeks.
A long answer to your question, but cathartic to talk about the process and share with others.
Short answer is no, it never goes away. Which isn't to say you ever have to experience another flare, if you treat your body with that in mind from here on out.
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3 ReactionsPMR first surprised me at 70.
Three flairs have happened in the past 10 years. One flair came after a cardiologist started me on Eliquis when I was 75 then another flair after the Covid injection. At 79, a minor flair but it has taken me 6 months to go from 20 mg of Prednisone to NONE at the present time.
I am now 80 and giving thanks everyday that no more Prednisone. I felt like a drug addict having to cut pills to keep my SLOW taper going.
The forum HEALTHUNLOCKED in the UK was invaluable helping describe symptoms and giving tapering advice, in addition to having a very patient physician here in South Carolina!
Am glad to have found the Mayo forum now. Good luck to you and have patience with yourself.
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2 Reactions@scpartain yes! I had enthusiastically resumed hiking when PMR appeared.
@scpartain
I'm still very early in my PMR journey. Can you define what remission for you means? Is it both a normal low CRP and being completely pain free or is it a "manageable" amount of morning pain? The prednisone dose I started with (12.5 mg) gives me reasonable symptom relief from noon onwards but from 4 am - noon, I have the usual pain
@dave923
There might be at least four different cases of being in remission ... maybe more.
The first is "remission on steroids" ... I don't think it means "no pain" but maybe it means "no relapses."
The second kind of remission is "steroid free remission." Once again it has more to do with not having a relapse of symptoms as opposed to not having any pain at all.
I'm probably considered to be in a steroid free remission but I am still on a medication called Actemra (tocilizumab). You could say I'm in remission with a medication but not prednisone. Therefore. I'm in a "steroid free remission induced by another medication." I do much better being off prednisone while still being treated with a biologic.
Lastly, there are people in remission without needing any medication. Those people might be said to be in a "medication free remission" which might be the best type of remission.
Keep in mind that there is no cure for PMR so remission is the best thing we can hope for. Also, having some pain is probably a "fact of life." I had pain before PMR was diagnosed so I never expected to be completely "pain free" with or without PMR and prednisone.
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4 Reactions@dave923 I've enjoyed two remissions. The first lasted thirteen years and when PMR returned, I had almost forgotten I ever had it and did not realize what was wrong with me at first. I've now been in my second remission for over five years. Remission to me means a complete absence of symptoms. It did take me at least a year to regain full motion of my joints, especially in my shoulders. Inflammatory markers have been raised from time to time, but without PMR symptoms, so I assume there was some other reason for that. Many factors, including simple ageing, can cause a rise in inflammation levels. I wish you good luck in your journey!
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2 Reactions@dadcue I second the notion that some pain is a fact of life for those of us with PMR and other conditions. Going on 7 years now of my brand of PMR remission but still use over the counter stuff for shoulder aches and wrist pain from degenerative arthritis.
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4 Reactions@johnbishop
Pain is a tough concept to grasp. I only take Actemra but my rheumatologist says it only treats the inflammation. She would be willing to prescribe something for pain if I need it.
Technically I take something for "nerve pain" mostly because of peripheral neuropathy in my feet. I don't call it pain but I do have tingling sensations in my feet. However, I don't have too much sensation in my feet so something that should be painful doesn't hurt so much.
Then there is the entire left side of my face that is now completely numb. I currently have no feeling at all on the left side of my face but it is still extremely "uncomfortable." I call it my crazy face because I can feel all kinds of things that don't exist at all.
Before I had surgery for trigeminal neuralgia, the left side of my face could become electrified by a slight breeze. Those electrical facial headaches were around my left eye. near my temple area and left side of my head and scalp. How my doctors knew it wasn't caused by GCA ... I will never know. Prednisone helped me control the electricity in my face.
The cause of my trigeminal neuralgia headaches wasn't determined until a sophisticated MRI scan was done. It was a vascular problem in the sense that a blood vessel was compressing my trigeminal nerve at the base of my brain. However, the painful electricity I felt was somewhere else.
Same for the radicular leg pain I felt that was due to lumbar spinal stenosis. I would have been willing to have my leg amputated because of the pain but there was nothing wrong with my leg. It was NOT caused by PMR either as was suggested on another forum because prednisone stopped that pain too,
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