Re Polymialgia Rheumatica
Posted , 7 users are following.
I gave read several threads regarding PMR. My husband woke up 1 day couldn't move we thought he had a stroke. He has had it 5 yrs or mire & specialist says he now diesntbthink its that. He has lost 60lbs in weight, had a heart attack last June, and husband muscles have wasted that his legs/arms have gotten really thin. He used to be heAvy set but no more. Small appetite. Has had depressionfor years due to hundreds of kidney stones but thus is getting him really down. Some days are fine & some days he is stiff & then suddenly he cannot move for being so stiff again. Do you think this is PMR?
0 likes, 17 replies
amkoffee Queenee
Posted
I know others Will be on here soon and give you good advice But I just wanted to tell you how sorry I am at how sick your husband has gotten. You don't mention if the Dr has him on prednisone But I'm assuming so. But if this is PMR then he is not on a Hugh enough dose.
Michdonn Queenee
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Same kind of a thing happened to me, I had I bad intestinal virus, then one morning the muscles in my groin and shoulders we're stiff and hurt terribly. I was eventually put on 20 mg of Predinisone, that helped and after a few weeks I felt good. I did have ESR & CRP lab work, both showed that I had high inflammation. Some people on the forum have said that is not necessary. I hope that helps. Good luck!
EileenH Queenee
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That really doesn't sound typical of PMR although I'm not quite clear what you mean - was it 5 years ago that he first had the being unable to move? If that is what you mean and the doctor is now saying it can't be PMR because of the time that he's had it - that isn't correct. I have had PMR for 13 years! Has he been on steroids?
Queenee EileenH
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Yes, been on them at first 20 mg, then after a while tapered off. He gets this stiffness & pain all over - do you? Could it still be PMR? What were your symptoms & what Mens are you on. He cannot have anti-inflamatories as he's gad lots of kidney stones, so has to protect his kidneys.
EileenH Queenee
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While 20mg is a typical dose to start on the tapering is not to get OFF pred, it is to find the lowest dose that manages the symptoms as well as the starting dose did. For many people that is below 10mg but for some it may be as little as under 5mg. Once the symptoms start to reappear the idea is to return to the last dose that managed the symptoms and remain there for a while and then try a SMALL reduction in the dose to see if it works now.
If you go to this post
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will find lots of links to articles about PMR and GCA. Some are aimed at professionals but even some of them are easy to understand.
This is the patient leaflet on this site
https://patient.info/health/polymyalgia-rheumatica-leaflet
which describes the very typical symptoms. I had most of them - except my blood markers were never raised. That happens for about 1 in 5 patients.
As I said I have had PMR for 13 years and been on pred for 8 years now. I've been as low as 4mg, but had a flare last year and went back to 15mg, now I'm back to 7mg.
EileenH
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dea13 Queenee
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Queenee dea13
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yes has been on Pred. Has some "in case". His specialist has sent him to another neyrologist because he says that ut gas lasted too long & that it can't be PMR.
Queenee
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He was at first I think 20mg. Then after a long while he was to tapper down. Don't know what's caused the muscle loss but know he has flare ups from time to time. Some worse than others & so back on the prednisone. Always tired too.
Anhaga Queenee
Posted
Hi Queenee. I'm not one of the experts, but it certainly sounds like he still had active PMR when he tapered off the pred. Would the doctor be willing to let him try taking it again to see if it helps? Lots of people have PMR for many years. In fact it's less likely that one will be well again in a year or two than that it will last four or five or even more years. If tapering is done carefully usually a person can stay at quite a low dose which won't cause serious side effects.
There is a side effect called myopathy, where the muscles lose strength. I don't know how long it takes for the muscles to regain some of their lost strength, especially if one is ill and in pain and unable to get much exercise.
Is there anything that can be done to ease the kidney problems? They must be contributing to his feelings of depression. I don't know if it would be worth consulting a registered dietitian? Certainly they could give helpful advice about a heart-healthy diet and probably even suggestions about ways to protect the kidneys.
Michdonn Queenee
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Anhaga Michdonn
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Michdonn Anhaga
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Anhaga Michdonn
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I don't remember napping before treatment, so probably the pred. Although I'm more inclined to blame my calcium supplement. Started taking my supper calcium at lunchtime a couple of days ago, and I had a nice little nap after lunch today! And I know the bedtime calcium helps me sleep.
Michdonn Anhaga
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Anhaga, I know it's not my Calcium, been on that for over 15 years or so. Only napping since PMR.
EileenH Michdonn
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It is probably the PMR - the underlying disease is still active, making your immune system attack your body. All the pred does is clear out the resulting inflammation - it doesn't change the real illness.
Michdonn EileenH
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