Ongoing pain with normal CRP and ESR - PMR?

Posted by sue16833 @sue16833, May 23 9:25am

I am down to 3mg of prednisone. Is it normal to still have pain in lower legs, shoulders (nagging no medication necessary) when the C reactive protein and Eryth. sed rates are within normal ranges?

Hello @sue16833, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. You will notice that we changed the title of your discussion a little to better describe your question and hopefully bring more members into your discussion to share their experience.

I have had two occurrences of PMR and lived with a little pain while tapering off of prednisone. I kept a daily log of my prednisone dosage and a pain scale of how I was feeling when I got up in the morning. When it was time to taper to the next lower dose I would do it if my pain level was a 1 or 2 on a scale of 1 to 10. I still have normal aches and pains like yours and have my CRP and ESR levels checked annually and they are usually in the normal range. Here are a couple of articles that provide a little more information on the tests and meaning.

— Erythrocyte Sedimentation Rate and C-Reactive Protein: Old But Useful Biomarkers for Pain Treatment: https://www.practicalpainmanagement.com/treatments/erythrocyte-sedimentation-rate-c-reactive-protein-old-useful-biomarkers-pain-treatment
— Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: a four-point guidance: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/

How long has it been since you were diagnosed with PMR and started on prednisone?

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@johnbishop

Hello @sue16833, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. You will notice that we changed the title of your discussion a little to better describe your question and hopefully bring more members into your discussion to share their experience.

I have had two occurrences of PMR and lived with a little pain while tapering off of prednisone. I kept a daily log of my prednisone dosage and a pain scale of how I was feeling when I got up in the morning. When it was time to taper to the next lower dose I would do it if my pain level was a 1 or 2 on a scale of 1 to 10. I still have normal aches and pains like yours and have my CRP and ESR levels checked annually and they are usually in the normal range. Here are a couple of articles that provide a little more information on the tests and meaning.

— Erythrocyte Sedimentation Rate and C-Reactive Protein: Old But Useful Biomarkers for Pain Treatment: https://www.practicalpainmanagement.com/treatments/erythrocyte-sedimentation-rate-c-reactive-protein-old-useful-biomarkers-pain-treatment
— Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: a four-point guidance: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/

How long has it been since you were diagnosed with PMR and started on prednisone?

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Thank you for your response. Before I found this format, I was at a loss to connect with others that had this disease. I was diagnosed the end of September, 2020. I started prednisone soon after my diagnosis. With the onset of PMR in September within 48 hours I was unable to go up stairs, open doors, it was quite an awakening of how much pain one can tolerate. I'm grateful for prednisone. However, the thought of a reoccurrence is terrifying. Is it true that one has a reoccurrence within six years on average? Again, thank you, I will read the articles.

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@sue16833

Thank you for your response. Before I found this format, I was at a loss to connect with others that had this disease. I was diagnosed the end of September, 2020. I started prednisone soon after my diagnosis. With the onset of PMR in September within 48 hours I was unable to go up stairs, open doors, it was quite an awakening of how much pain one can tolerate. I'm grateful for prednisone. However, the thought of a reoccurrence is terrifying. Is it true that one has a reoccurrence within six years on average? Again, thank you, I will read the articles.

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@sue16833 – Reoccurrence is common but each of us are different and no one really knows. I have a good friend about my age that was diagnosed about the same time as myself in 2006-2007 and he was able to get off of prednisone within a year and has not had another occurrence of PMR. I took 3-1/2 years to taper off the first time and it came back for me 6 years later in mid 2016. I was able to taper off in about 1-1/2 years the second time but I had made some lifestyle changes and was eating healthier and exercising more which I think helped me a lot.

Good luck on tapering and remember it's better to taper slowly.

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How much prednisone were you on?

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@654321

How much prednisone were you on?

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@654321 if your question was for me, I started both occurrences of PMR at 20 mg prednisone.

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@654321

How much prednisone were you on?

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I started with 20mg of prednisone and am currently on 3mg for a week.

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@johnbishop

@654321 if your question was for me, I started both occurrences of PMR at 20 mg prednisone.

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It is so hard to be on isn t it? I am down to two but don t have pain.

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@654321

It is so hard to be on isn t it? I am down to two but don t have pain.

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Yes, being on prednisone and trying to taper off can be pretty awful. You just have to take it slow and easy and listen to your body while tapering off. I chose to live with a little aches and pain but if it got too bad (above a 2 level for me) then I didn't taper to the next lower dose until I felt better.

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@654321

It is so hard to be on isn t it? I am down to two but don t have pain.

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That is wonderful to have made it to that low of a dosage. I am so looking forward to getting the Covid-19 vaccine. My doctor wants me to wait until I'm totally off of the prednisone and then get the J&J vaccine, she feels an adenovirus would be better choice, because it is one immune response vs two reactions.

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@johnbishop

Yes, being on prednisone and trying to taper off can be pretty awful. You just have to take it slow and easy and listen to your body while tapering off. I chose to live with a little aches and pain but if it got too bad (above a 2 level for me) then I didn't taper to the next lower dose until I felt better.

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I took the Pfizer and had no reactions . Was so excited . The dr wanted me to go ahead

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@johnbishop

Yes, being on prednisone and trying to taper off can be pretty awful. You just have to take it slow and easy and listen to your body while tapering off. I chose to live with a little aches and pain but if it got too bad (above a 2 level for me) then I didn't taper to the next lower dose until I felt better.

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Hi John, I am on 8mg prednisone for PMR, having jumped from 3mg because the Moderna first vaccine caused me to have a jump in the pains from 3 out of 10 to 8 out out of 10. I obviously want to get back down to 3mg or less but normally that would take weeks. So my big question is should I accept the Moderna second shot which we are due to get in the first week of July, 5 or 6 weeks from now.
I will probably be still on 6mg by then.
Is it dangerous to go with a Moderna second shot? I am planning to get it.
I accept another painful reaction and I can deal with the extra pain if required but I suspect the protection from the vaccine will be depreciated as I hear the immune suppressed amongst us have this issue.
If this is true then thousands of people will be walking around thinking they are protected when they are actually not.
I can't imagine our government will be offering tests to determine our level of protection. If you have comment i should be happy to hear your opinion.
Ken

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@golfbarmie

Hi John, I am on 8mg prednisone for PMR, having jumped from 3mg because the Moderna first vaccine caused me to have a jump in the pains from 3 out of 10 to 8 out out of 10. I obviously want to get back down to 3mg or less but normally that would take weeks. So my big question is should I accept the Moderna second shot which we are due to get in the first week of July, 5 or 6 weeks from now.
I will probably be still on 6mg by then.
Is it dangerous to go with a Moderna second shot? I am planning to get it.
I accept another painful reaction and I can deal with the extra pain if required but I suspect the protection from the vaccine will be depreciated as I hear the immune suppressed amongst us have this issue.
If this is true then thousands of people will be walking around thinking they are protected when they are actually not.
I can't imagine our government will be offering tests to determine our level of protection. If you have comment i should be happy to hear your opinion.
Ken

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Hi Ken @golfbarmie, I had the Pfizer vaccine but was not on prednisone. My side effects were the normal sore arm for both and extreme fatigue the next day after the 2nd Pfizer vaccine. I can understand your concern given the side effects from the first Moderna shot but I think I would weigh the risks of which is worse, getting COVID or more side effects. I think if I were you I would call my doctor and discuss it with them. There is another discussion that you can read the posts and learn what others with PMR have discussed on the vaccines.

PMR and Corona Virus (COVID-19) vaccine: https://connect.mayoclinic.org/discussion/pmr-and-corona-virus-vaccine/

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