How to address PMR pain while decreasing prednisone

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

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@awag

No side effects so far - thank goodness. My ophthalmologist ran all sorts of base line tests, which they say is part of the care of patients on this med. With my low dosage, they didn't seem to be too worried, but want to run annual tests, just to be sure. I'll admit, though, that I do miss the prednisone, as it is the ONLY thing that completely eliminates the pain...

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@awag, the only side effect I had with prednisone was a hefty weight gain on the first occurrence of PMR. I knew what to expect the second time around and was able to keep the weight gain in check more or less within 5 to 10 lbs. Prednisone is the magic pill for PMR for most of us.

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@johnbishop

@awag, the only side effect I had with prednisone was a hefty weight gain on the first occurrence of PMR. I knew what to expect the second time around and was able to keep the weight gain in check more or less within 5 to 10 lbs. Prednisone is the magic pill for PMR for most of us.

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I was on Prednisone for almost 2 years, and my doctor wanted to move me to another treatment for the longer term. I do still have some hip pain, but not all the time. Am seeing a correlation to my diet and pain, so am testing out eliminating certain kinds of foods to see if that helps. Again, when the pain does wake me up, I use a little high quality CBD lotion and the pain completely goes away in a few minutes, and I can go back to sleep. Right now it is manageable, thank goodness.

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I was diagnosed with PMR on Dec. 12th last year. I believe I had it for many months before then, but because I was 90 yrs old thought it was part of being so old. However, I became ill with shingles which prompted a doctor visit which culminated in the PMR diagnosis after a blood test. My symptoms were almost unbearable pain, especially at night, in thighs buttocks and shoulders. The pain would expand in a lesser degree into other parts of my limbs. My doctor immediately put me on a three day dosage of 20mg to calm down the inflammation. It worked. After first dose I slept for 12 hours instead of 2-3 hrs. I am trying to taper myself off the Pred. I am down to 3.75mg in the morning and 2.5 in the evening. Do have some discomfit, but can manage to do my errands, volunteer work etc. In another week or two I will try to lessen dose. If I have to increase again, so be it. I just have to learn to live with it as I can not "will" it away, no matter how hard I try. Hope this helps you. 🙂 Also, I eat a good diet, almost completely vegetarian, organic, with a very small amount of range free meat. Exercise helps.

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@noosat1

I was diagnosed with PMR on Dec. 12th last year. I believe I had it for many months before then, but because I was 90 yrs old thought it was part of being so old. However, I became ill with shingles which prompted a doctor visit which culminated in the PMR diagnosis after a blood test. My symptoms were almost unbearable pain, especially at night, in thighs buttocks and shoulders. The pain would expand in a lesser degree into other parts of my limbs. My doctor immediately put me on a three day dosage of 20mg to calm down the inflammation. It worked. After first dose I slept for 12 hours instead of 2-3 hrs. I am trying to taper myself off the Pred. I am down to 3.75mg in the morning and 2.5 in the evening. Do have some discomfit, but can manage to do my errands, volunteer work etc. In another week or two I will try to lessen dose. If I have to increase again, so be it. I just have to learn to live with it as I can not "will" it away, no matter how hard I try. Hope this helps you. 🙂 Also, I eat a good diet, almost completely vegetarian, organic, with a very small amount of range free meat. Exercise helps.

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@beryl......hello noosat1 good to hear that you are doing so well and that the pain is so much better enabling you to do things ....be careful not to go down too fast as you don't want the PMR to come back and spoil your day .......best of luck Beryl

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I have been diagnosed with PMR for 3-4 months. I am lowering my dosage on my terms, as I know how my body feels more than anyone else. I started yesterday on 6mg per day, split to morning and evening. I will stay on this for several weeks then try to lower to 5.5. It is hard for me to be patient, but I know it is important to be so. Also, I know I should not drink wine, however, I do have a glass with dinner about three times a week. I think I can do that because I watch the rest of my diet very, very carefully. Little or no processed foods or sugar, anti-inflammatory spices such as turmeric, cinnamon etc. added to dishes I cook. (I use cinnamon and organic stevia on a piece of toast in the morning) Do keep checking this site. I have found lots of valuable information from other posts.

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@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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