Polymyalgia rheumatica

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can’t take pain meds, but do drink wine to ease pain, although I’m told no alcohol w prednisone. Anything you can share as far as info

@johnbishop

Hello @barbararene, welcome to Mayo Connect. I also have PMR. The first time I was diagnosed with PMR was put on 20 mg of prednisone. It took me well over a year to titrate off of prednisone going back and forth between 1 mg to 1/2 mg before I was finally able to get off of it. My PMR has been in remission until this past August and I was put back on 20 mg of prednisone. My doctor put me on a 21 week titration schedule to get off of it and I’m now on week 23 and going back and forth between 10 and 7.5 mg of prednisone. I have been as low as 5 mg but the pain was bothersome. I have a doctors appointment next week and am planning to discuss a different titration schedule. I think the first time it was trying to reduce the dosage every 3 days instead of every week. I can deal with a little pain but didn’t want it to get out of hand. I don’t use any alcohol as it has negative effects on my small fiber peripheral neuropathy.

Are you able to split the 5 mg pills to go from 10 to 7.5 mg? I think that’s how I was finally able to get off the first go round with my PMR.

Hoping your PMR goes into remission so that you can stop taking the prednisone.

John

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Hi John, I have a question for you. During the past week, I have been awakened 3 nights with a leg cramp. Could that be the result of having PMR or taking prednisone? I have to admit that each day, Ihas been a little more active than usual. Maggie

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@noosat1

Hi John, I have a question for you. During the past week, I have been awakened 3 nights with a leg cramp. Could that be the result of having PMR or taking prednisone? I have to admit that each day, Ihas been a little more active than usual. Maggie

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I had left leg. Cramps in the morning for several months before I was diagnosed with PMR. Along with the other pain, neck/shoulder/right arm it was very difficult to get out of bed in the am. After diagnosis with OMR and GCA and 60 mg of prednisone, .pain gone. 7 months later I am finally down to 10 mg!! WhooHoo😊

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Thanks for reply. I started on 40 for 3 days and after several months have taken myself down to 6mg per day. Perhaps it is the tapering to 6 that has caused cramp. However, as it is not really debilitating once I get out of bed, I am not going to go back up on the Pred. To do that, I would have to have a serious flareup.:)

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Hi @noosat1 and @dar9216, It's really great to hear you having success tapering down on the prednisone. I did have leg cramps once in awhile during the night or when getting up. What helped me was to stay hydrated and drink more water than I normally do. I still have a problem not drinking enough water and too much coffee but I'm a work in progress ☺ I still have stiffness in the legs and joints when I get up in the morning even though the PMR is in remission. I normally do 10 to 15 minutes on an elliptical machine in my bedroom when I first get up and that does a lot to help with the stiffness. It's an easy 10 to 15 minutes. I don't make it a cardio type workout, just activity to get loosened up.

Hoping you both have a pain free day.

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Thanks for reply, John. I am trying, as a used to be low water drinker, to more intake of same. My loosening up comes in the very hot shower. I do leg stretches and have also come within 1/2 to 1" from touching my toes. When I sit to watch a little c-span news, I try to do a few easy body flexibility exercises. I am longing for warmer weather so that I can take Lily to the park in the morning and do some walking. Yesterday afternoon was sunny and warm, so I did a little pruning of salvia bushes out front and filling of pots on the deck to get ready for planting. Cold and grey this morning, however, it is "book club" day, which will make me be somewhat active. I do think this is very important , both physically and mentally.

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@noosat1

Thanks for reply, John. I am trying, as a used to be low water drinker, to more intake of same. My loosening up comes in the very hot shower. I do leg stretches and have also come within 1/2 to 1" from touching my toes. When I sit to watch a little c-span news, I try to do a few easy body flexibility exercises. I am longing for warmer weather so that I can take Lily to the park in the morning and do some walking. Yesterday afternoon was sunny and warm, so I did a little pruning of salvia bushes out front and filling of pots on the deck to get ready for planting. Cold and grey this morning, however, it is "book club" day, which will make me be somewhat active. I do think this is very important , both physically and mentally.

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Yay!! I learned something new today. Thanks @noosat1. I had no idea what kind of a bush a Salvia is and had to look it up. It's really pretty. Wished they would grow up her in the frozen tundra, I would be tempted to try them…maybe not though if I have to prune them all the time ☺

https://www.joyusgarden.com/pruning-perennial-salvias/

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@noosat1

Thanks for reply. I started on 40 for 3 days and after several months have taken myself down to 6mg per day. Perhaps it is the tapering to 6 that has caused cramp. However, as it is not really debilitating once I get out of bed, I am not going to go back up on the Pred. To do that, I would have to have a serious flareup.:)

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I take a little potassium if I get cramp seems to deal with mine…..also take magnesium that helps me a lot……but John is right lots of water is the best for you ……Beryl

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@johnbishop

Hi John, I am now on 15 mgms of Prednisone, down from 30 which is good. Now have probs w/hips, but had cortisone shots to help. Can you tell me if you had blood pressure probs while on Prednisone ? Mine seems to be higher in the eve. I really enjoy reading your comments and hope your PMR stays in remission!!

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@dreamer38

@johnbishop

Hi John, I am now on 15 mgms of Prednisone, down from 30 which is good. Now have probs w/hips, but had cortisone shots to help. Can you tell me if you had blood pressure probs while on Prednisone ? Mine seems to be higher in the eve. I really enjoy reading your comments and hope your PMR stays in remission!!

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Hi @dreamer38, I do have high blood pressure. Have been on different meds since my 40s (75 now). I usually check my BP in the morning but haven't noticed much difference checking it in the evening. Have you discussed it with your doctor? I have one of those wireless blood pressure monitors and have noticed the past few months mine is a little higher than it used to be so I plan to discuss it with my doctor next month at my yearly get together ☺

I hope PMR goes into remission for all of us and stays there! It can be a challenge to deal with. One of my biggest challenges is to keep moving even when it hurts a little. I think mild exercise is something that really helps.

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Morning John, I passed one of my goals to-day. While stretching in the shower, I touched my toes not once, but 10 times. Hooray !!!!!!

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Hello there,

I noticed that my blood pressure went up slightly. However, this morning it was quite a bit higher than expected. I intend to take it later in the day. I do think it is one of the undesirable effects of the prednisone.

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@johnbishop

Yay!! I learned something new today. Thanks @noosat1. I had no idea what kind of a bush a Salvia is and had to look it up. It's really pretty. Wished they would grow up her in the frozen tundra, I would be tempted to try them…maybe not though if I have to prune them all the time ☺

https://www.joyusgarden.com/pruning-perennial-salvias/

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It is native to Texas and can grow wild, several kinds. I am a Master Naturalist and conservationist, so am very careful what I plant, although if a bird drops a non-native in the yard and it blooms and thrives, I will let it be. I also have to watch out for deer, rabbits and other creatures that wander around my house.

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I have been wondering what caused my PMR. I see that you are a master naturalist and conservationist. I assume that you dig in the dirt. This past spring & summer I did a lot of irrigation ditch digging for my lawn sprinkler system. Some of the time I was down on my hands & knees digging bare handed, sawing through roots, etc. After suffering from June to August 24th, I was diagnosed with PMR after a blood test that measures sedimentation rate went up to 44. Normal is 0 to 10. I'd like to hear from anyone who had a lot of contact with the earth or compost. I was started on 30 mg of prednisone and felt almost normal in 2 days with the exception of my shoulders which had been x-rayed and showed osteoarthritis.

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Hello @pringsmuth, I see you have been a member since last October but this is your first post so I would like to welcome you to Connect and thank you for posting. I'm tagging @noosat1 since I'm assuming your post was meant to be for her. If you want to make sure the member sees your post, just type their @membername and they will receive an email notification.

I have no medical training or background but I don't believe they really know what causes polymyalgia rheumatica (PMR). The Arthritis Foundation has a good explanation of PMR on their site.

Polymyalgia Rheumatica Causes (2nd paragraph)
https://www.arthritis.org/about-arthritis/types/polymyalgia-rheumatica/

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@pringsmuth

I have been wondering what caused my PMR. I see that you are a master naturalist and conservationist. I assume that you dig in the dirt. This past spring & summer I did a lot of irrigation ditch digging for my lawn sprinkler system. Some of the time I was down on my hands & knees digging bare handed, sawing through roots, etc. After suffering from June to August 24th, I was diagnosed with PMR after a blood test that measures sedimentation rate went up to 44. Normal is 0 to 10. I'd like to hear from anyone who had a lot of contact with the earth or compost. I was started on 30 mg of prednisone and felt almost normal in 2 days with the exception of my shoulders which had been x-rayed and showed osteoarthritis.

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I don't believe contact with dirt has anything to do with getting PMR. I Had my 91st birthday this past January, so I have been doing it for a long, long time. Actually there is a theory out there that we have become so sanitary/clean that we tend to get more illnesses than our forefathers. My understanding of PMR is that there is no known cause, but that many people who suffer from it have undergone some stress in the body that triggers the autoimmune system to "misfire." I now believe that I was suffering from PMR long before diagnosis. I kept telling myself my pains were due to aging, I was very active. It was not until the pain in my thighs and shoulders became so unbearable that I could not sleep at all that I went to the doctor and found my SED rate was at 57 . After Prednisone 2 weeks ago it was down to 26, but it has to go under 20. I too have osteoarthritis. Mine is in my hips and lower back. This is giving me some pain/discomfit right now, but I think that is because I overdid yesterday. I finally touched my toes, but instead of doing it once and being satisfied, I did it 11 times. To-day is overcast, but warm, so I plan to take Lily dog to the park and see how far I can walk, slowly, before I have to rest. Hope you are feeling considerably better to-day 🙂

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