New to PMR and confused
Posted , 7 users are following.
I was diagnosised with PMR four months ago and was put on steroids which tamed down the symptoms within the typical 48-72 hours. I'm slowly trying to go down in the doseage. Labs are now normal but I still have symptoms, not even close to as bad as prior to medication but still there. Do any of you still have mild symptoms with normal labs, is that possible?
The reason I am confused is that I had symptoms for several months before they ramped up to the point I was in terrible pain and had trouble getting out of bed or out of a chair etc, the normal symptoms most seem to report. At my worst and only until then did my labs register as high and only then was the diagnosis made. My doctor is telling me that if I am having pain with normal labs then it must be the osteoarthritis and not the PMR. My simple question is, do any of you have breakthrough mild to moderate symptoms needingOTC pain medication while still pulling normal labs?
2 likes, 10 replies
EileenH mary36969
Posted
Any doctor who tells you you should be totally pain-free from PMR when on pred is talking rubbish. Some people are, some are not. I am not - and I don't have osteoarthritis. I've had rheumys who tried to tell me the pain I had was osteoarthritis in the past - but there is no evidence of it now. I, and many others, don't find OTC painkillers do anything for PMR pain. And if you are on pred it is recommended you shouldn't take NSAIDs (ibuprofen, aspirin, Mobic, celebrex) at the same time, it increases the risk of stomach irritation and bleeding.
That aside - what dose are you on now? If you reduce too fast or too far you risk pain again: either because of steroid withdrawal or because you have gone to too low a dose to control the inflammation which is causing the pain in PMR. The pred does nothing for the underlying autoimmune disorder that is the indirect cause of the symptoms you have. That continues until it eventually burns out - then it doesn't cause inflammation, you no longer need pred.
Some people will have high labs at the start which fall as the inflammation recedes. If the inflammation then gets out of control again they may or may not rise again. It all depends, they can lag a long way behind (as you saw in the first place) but everyone is different. Most of us don't fit the textbooks!
mary36969 EileenH
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EileenH mary36969
Posted
mary36969
Posted
EileenH mary36969
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A top group of rheumy researchers in the UK keeps patients at 10mg for a year and find that that definitely reduces the rate of flares/relapses. The usual reduction patterns result in a flare rate of about 3 in 5, theirs takes it down to 1 in 5 - still too many but far better.
Now you have found us do keep in touch. All the very best to you both and "Gute Besserung" as my German-speaking Italian neighbours her inthe Dolomites would say! (Get well!!!!)
Mrs.Mac-Canada mary36969
Posted
I have learned that slow decreases till you find your symptoms are managed is the most important thing to keep in mind. Then you can VERY slowly decrease.
You might want to try yoga or meditation for your stress. I found yoga very helpful.
debbie27473 mary36969
Posted
Yes, I too still get moderate pain even when my bloods levels go down. My doctor (who has been very good) is now confused and says she can't understand why i am still in any pain. (I was diagnosed in Jan. this year and started on 15mgs of pred. Now on 12.5mgs) She has just referred me to a rheumatologist. I have tried to explain the latest research and all our experiences to her but I don't think it sinks in! Also, yes. Stress definitely makes the pain worse for a few days until you give in and rest more. Trouble is that just having pmr and being in constant pain is very stressful so avoiding it is nigh on impossible! Sorry! I'm sounding very negative. On a good note, by joining this forum you have just made loads of new friends, all of whom are truly understanding of your problems and will be there day or night to offer support and help! Its wonderful. Take care, Debbie
vawils mary36969
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yes i concur with the other responses you have gotten as to having pmr symtoms even with normal blood work. My rhematologist also suggested I shouldn't be having any symtoms which is just wrong in my case. I certainly still have symtoms including muscle fatigue, general fatigue, muscle soreness and others some of which may be due to the prednisone. I am also on a NSAID drug - meloxicam, that the doctor thinks i need but i am not sure it helps any and am concerned about the side effects so probably going to stop taking it to see what happens. I had tried NSAIDs before my pmr diagnosis (and prednsione) and they did nothing to help at the that time when the pain was the worse.
debbie27473 vawils
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EileenH debbie27473
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I wouldn't take it.