PMR flare without a dose reduction

Posted by skiing @skiing, Jun 14 4:35pm

I have had pmr for 1 year now I reduced to 8 mg by last December when I had my first flare. I went up to 15 mg and reduced again to 10 mg then .5 mg per month. A couple of days ago I was at 8.5 mg and had been for almost a month with no issues. 2 days ago my lower back was sore then my left shoulder and now my right.
I have been doing yard work and golfing. I have seen my dr who ordered a crp blood test and tomorrow will see my physio. Should I increase my dose to 13. 5 for a week or so then go down to 9 mg and start again the taper at .5 mg per month. My dr thinks this should work and leaves this up to me as he knows I am conscientious. Looking for this group’s suggestions

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@skiing I think I remember having a few similar flares during my first round with PMR that when I had been on a dose of around 10 mg and felt pretty good. I overdid some activities during the day and I felt worse the next day. The first time I didn't put 2 and 2 together but the second time it happened I started listening to my body a little closer and tried not to overdo any activity/exercise. @jmcc, @tsc, @kmeikle1, @milld835 and others may have some thoughts or suggestions for you.

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@johnbishop

@skiing I think I remember having a few similar flares during my first round with PMR that when I had been on a dose of around 10 mg and felt pretty good. I overdid some activities during the day and I felt worse the next day. The first time I didn't put 2 and 2 together but the second time it happened I started listening to my body a little closer and tried not to overdo any activity/exercise. @jmcc, @tsc, @kmeikle1, @milld835 and others may have some thoughts or suggestions for you.

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Hi @skiing, I've read that too much activity can cause flare ups. Best not to overdo it. Did you get back an elevated CRP? I think tapering is a balancing act, so, hopefully, the increased dosage will alleviate your pain and the gradual taper will help.

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@skiing Your proposed taper plan sounds reasonable (up 5 mgs. and then drop when you are stabilized to where you last felt good). Important to remember that prednisone does not cure PMR, it only covers the pain. Unfortunately, we need to modify our lifestyle (diet and level of exercise) to accomodate our disease. I can't do nearly as much exercise as I did before my diagnosis. Also, your CRP may be okay since you are taking prednisone which reduces inflammation. You are fortunate to have a doctor who trusts you to manage your prednisone. My rheumatologist does the same and I appreciate that. No one wants to be on prednisone (I certainly don't), and I don't take any more than I must to have even the limited quality of life I have. If you felt good at 9 mgs., you may need to stay there for awhile before attempting to taper to 8.5 which you were not ready for at this time.

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@skiing Like you, my doc works with me and checks in to see what I "feel" my body needs/wants. One thing he suggested when I starting having some pain during my prednisone course, was to try Tylenol and if that helped or eliminated the pain, that was an important factor. Sometimes, our body just hurts even though it may not be PMR. BUT increasing prednisone really is not the worst thing in the world – your health and quality of life are at the top of our Bucket List.

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I was dx with PMR 16 mo ago.
I started on 15 mg and am down to 4 now. During that time I haven’t had to increase the dose due to a big flare up. But I have had occasions of mini-flare ups when I do more activity than normal or traveling. So far those little flare ups have lasted from a week to a month and I am able to manage with rest, ice/heat and Tylenol.

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@suemce

I was dx with PMR 16 mo ago.
I started on 15 mg and am down to 4 now. During that time I haven’t had to increase the dose due to a big flare up. But I have had occasions of mini-flare ups when I do more activity than normal or traveling. So far those little flare ups have lasted from a week to a month and I am able to manage with rest, ice/heat and Tylenol.

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Welcome @suemce, It sounds like your tapering down on prednisone is going pretty good. You are right about the overdoing activity causing a little more pain the following day. Activity helps but when your PMR is active you have to listen to your body when tapering down on prednisone. I experienced the same thing when I was tapering down and overdid the activity. I paid for it the next day and sometimes had to have a minor increase for a day or so along with rest.

Do you mind sharing what you were searching for when you found Connect?

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When I first found the Mayo Clinic connect group I was just looking for any information on PMR illness. I did not know much about it at all even though I was lucky enough to be dx on my first visit to my Primary doctor. I had 9/10 symptoms but had not had labs done yet. It took 3 mo. To be seen by a rheumatologist who also agreed it was PMR. Since that time a year ago there have been 2 women that I know that have had it in the past and both are in remission at this time which is encouraging. My rheumatologist said the average time being on prednisone was generally around two years.

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@kmeikle1

@skiing Your proposed taper plan sounds reasonable (up 5 mgs. and then drop when you are stabilized to where you last felt good). Important to remember that prednisone does not cure PMR, it only covers the pain. Unfortunately, we need to modify our lifestyle (diet and level of exercise) to accomodate our disease. I can't do nearly as much exercise as I did before my diagnosis. Also, your CRP may be okay since you are taking prednisone which reduces inflammation. You are fortunate to have a doctor who trusts you to manage your prednisone. My rheumatologist does the same and I appreciate that. No one wants to be on prednisone (I certainly don't), and I don't take any more than I must to have even the limited quality of life I have. If you felt good at 9 mgs., you may need to stay there for awhile before attempting to taper to 8.5 which you were not ready for at this time.

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I'm due to drop from 13 mg to 12 mg today and I in no way feel ready for that. I've been sore through upper back and neck, back of thighs and this morning backs of arms started up. The weather here is so damp and humid last few days, which does not help. Not saying that this will continue, but I do not feel well enough today to do this and I'm already behind in the Rheumatologist's taper schedule, because I had to go up a bit from 12.5 to 13, two weeks ago (at which I only felt slightly better). I'm a believe in let your body do the talking. Ugh.

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@milld835

I'm due to drop from 13 mg to 12 mg today and I in no way feel ready for that. I've been sore through upper back and neck, back of thighs and this morning backs of arms started up. The weather here is so damp and humid last few days, which does not help. Not saying that this will continue, but I do not feel well enough today to do this and I'm already behind in the Rheumatologist's taper schedule, because I had to go up a bit from 12.5 to 13, two weeks ago (at which I only felt slightly better). I'm a believe in let your body do the talking. Ugh.

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You got this @mild835! Hoping it's just a minor pause in the taper.

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@milld835

I'm due to drop from 13 mg to 12 mg today and I in no way feel ready for that. I've been sore through upper back and neck, back of thighs and this morning backs of arms started up. The weather here is so damp and humid last few days, which does not help. Not saying that this will continue, but I do not feel well enough today to do this and I'm already behind in the Rheumatologist's taper schedule, because I had to go up a bit from 12.5 to 13, two weeks ago (at which I only felt slightly better). I'm a believe in let your body do the talking. Ugh.

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I like @johnbishop encouragement that you pause. I do hope you are able to get your Rheumatologist to understand that our taper can not be on their schedule. I would never drop if my pain was not stable. We're reducing to find the lowest dose where our pain is controlled at the level it was when we first started prednisone. We are not reducing relentlessly to zero. If you try to do that the inflammation will accumulate and you'll have a flare. I try not to yoyo, but you may need to go back to where you last felt pretty good (I'm never painless), stabilize for a time and then try to slowly reduce again. It is a struggle. I agree with your comment to "let your body do the talking."

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@milld835

I'm due to drop from 13 mg to 12 mg today and I in no way feel ready for that. I've been sore through upper back and neck, back of thighs and this morning backs of arms started up. The weather here is so damp and humid last few days, which does not help. Not saying that this will continue, but I do not feel well enough today to do this and I'm already behind in the Rheumatologist's taper schedule, because I had to go up a bit from 12.5 to 13, two weeks ago (at which I only felt slightly better). I'm a believe in let your body do the talking. Ugh.

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Hi @mild835, my rheumatologist told me to advise him of any changes in my symptoms when I started to taper and go back to the previous dosage for a couple of weeks, then try the taper again. The schedule may be good for your Rheumatologist, but not so great for you. We're all different and our bodies don't always react according to plan.

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@tsc

Hi @mild835, my rheumatologist told me to advise him of any changes in my symptoms when I started to taper and go back to the previous dosage for a couple of weeks, then try the taper again. The schedule may be good for your Rheumatologist, but not so great for you. We're all different and our bodies don't always react according to plan.

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Thanks for this. I decided to drop down 1/2 mg. for a couple of weeks and then maybe the drop to 12. Feel more comfortable doing it this way. She was not the most "congenial" Rheumatologist and even though her reviews are terrible, I decided to go in with an open mind. She lived up to the reviews. I don't see her for another 3 months, so time to shop around. Take care.

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