PMR and tapering -- will blood work change?

Posted by John, Volunteer Mentor @johnbishop, May 8, 2018

I received a private message from @alanbruce that I think a lot of you may be interested in or thinking about. Alan said it was OK so I thought it might be a good idea to start a new discussion.

Alan’s question — I started out on Prednisone last August on 20s and I am now 4s. Just had blood work done and from a month ago SED rate is now 4 and it was 3 and CRP is now .5 and it was .3. Both in normal range. Do you normally see these reading go up when Prednisone rate goes down. How will I know if I can continue to decrease prednisone? will there be significant discomfort and or Higher test number possibly above the normal range as taper down. Can different labs give different results.

My response — Hi Alan, You ask a really good question. I’m have no medical training or background but can share my experience with you. Would you mind if I answer your question in the discussion? I think it’s a good question and others may be struggling with the same question.

I think the SED rate is just an indicator of inflammation which is what the prednisone treats. The kicker is that each of us and our tolerances are different. When my PMR came out of remission back in June/July of 2016 and I went to the doctor, he ordered a SED rate test and mine came back at 16 (normal for men being 0 to 22) and confirmed the PMR was back. I started back on 20 mg prednisone and tapered off at a rate of up to 5 mg a week once I was feeling better and most of the pain was gone. When I got to 10 mg I changed to tapering by 2.5 mg a week until I felt OK at 5 mg. From 5 mg to off I switched to 1 mg tablets and went down 1 or 2 mg a week. I can tell you there was a lot of setbacks and going back to the previous dose for a few days and then going back down. I was able to stop taking prednisone on the last day of February 2018. I still have some stiffness in my hands and shoulders mostly in the mornings which I try to control with some stretching exercise and 30 minutes or so on my recumbent exercise bike. I had a SED rate test Jan 1, 2018 and it was at 1. That was about 2 months before I stopped taking prednisone.

Alan — I am glad to have you share my question and your answer. A couple more questions .

1. at point did you know it was time to go back on or a higher amount of Prednisone?

2. How was the doctor to know that the PMR was back as I assume there is no test for PMR, I was also told that I had PMR and the Prednisone eliminated all of the pain but I always wondered how the doc knew PMR was my issue .

3. since it takes so long to see the Doc at what point in time did you think it was back?

4. Is the 20 mg and the tapering process you went thru a standard process. I have been on the Mayo’s tapering protocol and now on 4 mg and started having some morning stiffness in both shoulders. Stretching, hot shower or a spa when available totally frees it up. Do you take any over the counter pain med such as Tylenol. I have a torn rotator cuff in one arm and thought to stiffness in that arm was the explanation. I am suppose to go to 3s in two weeks and I know wonder if I should stay on 4 longer or what. It seems as though there is no standard answer. I see the Doc at the end of May and I will see what they say.

Thank you Alan for questions that I know most of us with PMR have asked or thought about. I will give you my experience to the last 4 questions in the first post below. I’m hoping other members will share their experience in relation to your last 4 questions and offer suggestions for what worked for them.

John

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

Hi @alanbruce — thanks for starting this discussion. I want to reiterate that I have no medical background or training and I'm only sharing my experiences with my two occurrences of polymyalgia rheumatica (PMR).

1. During time tapering off of prednisone how did I know it was time to go back on a higher dose of prednisone — I went back to the previous dose if the pain and stiffness was too much. This was subjective for me as I wanted to get off of prednisone and was willing to live with some minor pain.

2. How did the doctor know that the PMR was back – the second occurrence I told the doctor the PMR was back. I don't think it's something you forget after the first episode. The doctor order some blood tests to check the SED rate and C-reactive protein which are indicators according to Mayo Clinics Polymyalgia rheumatica – Diagnosis & Treatment:
https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545

3. At what point did I think it was back – It seemed to show up rather quickly the second time. I started having trouble with my arms falling asleep at night since I'm a side sleeper. Then I would be in a little more pain in the mornings when I woke up and my shoulders and hands seemed stiffer. After a few days I was pretty sure the PMR was back and setup an appointment for a checkup. It did take me a week or so to get a doctors appointment to follow up.

4. Standard tapering process for prednisone – this is the 64 thousand dollar question. For my first occurance, my rheumatologist gave me a tapering schedule and I think it was tapering weekly starting with 5 mg reduction but he also told me it depends on how I feel when the dosage was reduced. I remember staying on 15 and 10 mg for multiple weeks and longer when I got to 5 mg. I think it's an individual thing and tapering schedules should be discussed with your doctor. I found some handy tapering calendars you can print off here:
https://rheuminfo.com/physician-tools/prednisone-tapering-calendar/

I would like to tag other members who have posted about PMR to get their thoughts. @sherw @Robert43DAP @kiltlady @selrahc @sallyann @cyndee @nancestl @charlena @jchatchett @rolandhp and others — can you share your thoughts and experiences for Alan's questions?

John

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@johnbishop

Hi @alanbruce — thanks for starting this discussion. I want to reiterate that I have no medical background or training and I'm only sharing my experiences with my two occurrences of polymyalgia rheumatica (PMR).

1. During time tapering off of prednisone how did I know it was time to go back on a higher dose of prednisone — I went back to the previous dose if the pain and stiffness was too much. This was subjective for me as I wanted to get off of prednisone and was willing to live with some minor pain.

2. How did the doctor know that the PMR was back – the second occurrence I told the doctor the PMR was back. I don't think it's something you forget after the first episode. The doctor order some blood tests to check the SED rate and C-reactive protein which are indicators according to Mayo Clinics Polymyalgia rheumatica – Diagnosis & Treatment:
https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545

3. At what point did I think it was back – It seemed to show up rather quickly the second time. I started having trouble with my arms falling asleep at night since I'm a side sleeper. Then I would be in a little more pain in the mornings when I woke up and my shoulders and hands seemed stiffer. After a few days I was pretty sure the PMR was back and setup an appointment for a checkup. It did take me a week or so to get a doctors appointment to follow up.

4. Standard tapering process for prednisone – this is the 64 thousand dollar question. For my first occurance, my rheumatologist gave me a tapering schedule and I think it was tapering weekly starting with 5 mg reduction but he also told me it depends on how I feel when the dosage was reduced. I remember staying on 15 and 10 mg for multiple weeks and longer when I got to 5 mg. I think it's an individual thing and tapering schedules should be discussed with your doctor. I found some handy tapering calendars you can print off here:
https://rheuminfo.com/physician-tools/prednisone-tapering-calendar/

I would like to tag other members who have posted about PMR to get their thoughts. @sherw @Robert43DAP @kiltlady @selrahc @sallyann @cyndee @nancestl @charlena @jchatchett @rolandhp and others — can you share your thoughts and experiences for Alan's questions?

John

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Here are a couple of links with more information:

Rheumatology: 11. Evaluation of the patient with pain all over
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC80687/

Erythrocyte Sedimentation Rate (ESR)
https://rheuminfo.com/common-tests/erythrocyte-sedimentation-rate-esr/

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@johnbishop

Here are a couple of links with more information:

Rheumatology: 11. Evaluation of the patient with pain all over
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC80687/

Erythrocyte Sedimentation Rate (ESR)
https://rheuminfo.com/common-tests/erythrocyte-sedimentation-rate-esr/

Jump to this post

Hi John,

I've been reading through some of these threads on PMR. I wish I had found this forum sooner! I wanted to share my experience and see if you have any advice for me. I was diagnosed with PMR in July 2017, after an acute onset. I'm 62, and I couldn't walk or sleep from pain (hip area, upper arms).

I started prednisone at 40 mg, because I had also had some headaches, and the doc had me biopsied for GCA (negative). The prednisone worked within hours. I quickly came down to 20 mg. I had trouble getting below that, and the doctor added methotrexate to the mix, after which I got down to 10 within a couple of months. Now, it has been 3 more years, and I'm hovering at 5 mgs, still with the methotrexate (injections, because I for some reasons didn't metabolize the oral form). My CRP has been extremely hard to reduce. It was in the 60s on diagnosis, and the lowest reading I've ever had was an 8. It has been gradually rising since that reading, and now stands at 18.

When I try to lower the prednisone, I get a bit achy, but not too bad. The main thing is that my CRP seems to rise. If I were weaning based on symptoms alone, I would probably be down to 2 or 3 mgs by now, or even lower. (Last spring, when Covid hit, my doc had me go off everything for some reason, and after 6 weeks I had a huge flare that put me in bed for a week, so I know I can't just go cold-turkey.)

My real question is: should I pay attention to the CRP, or should I just focus on symptoms and try to get off the prednisone anyway? I know you are not a doctor, but I want to know whether the numbers or the symptoms are the main guiding factor, in your opinion.

I should mention that I have two complicating health issues. One is that I am now obese (thank you, prednisone), which I know contributes to inflammation. And I have another mildly inflammatory illness (but which never put my CRP this high). It's possible the high CRP is something cumulative going on.

Thanks for any thoughts you can share!

REPLY
@throughhiker

Hi John,

I've been reading through some of these threads on PMR. I wish I had found this forum sooner! I wanted to share my experience and see if you have any advice for me. I was diagnosed with PMR in July 2017, after an acute onset. I'm 62, and I couldn't walk or sleep from pain (hip area, upper arms).

I started prednisone at 40 mg, because I had also had some headaches, and the doc had me biopsied for GCA (negative). The prednisone worked within hours. I quickly came down to 20 mg. I had trouble getting below that, and the doctor added methotrexate to the mix, after which I got down to 10 within a couple of months. Now, it has been 3 more years, and I'm hovering at 5 mgs, still with the methotrexate (injections, because I for some reasons didn't metabolize the oral form). My CRP has been extremely hard to reduce. It was in the 60s on diagnosis, and the lowest reading I've ever had was an 8. It has been gradually rising since that reading, and now stands at 18.

When I try to lower the prednisone, I get a bit achy, but not too bad. The main thing is that my CRP seems to rise. If I were weaning based on symptoms alone, I would probably be down to 2 or 3 mgs by now, or even lower. (Last spring, when Covid hit, my doc had me go off everything for some reason, and after 6 weeks I had a huge flare that put me in bed for a week, so I know I can't just go cold-turkey.)

My real question is: should I pay attention to the CRP, or should I just focus on symptoms and try to get off the prednisone anyway? I know you are not a doctor, but I want to know whether the numbers or the symptoms are the main guiding factor, in your opinion.

I should mention that I have two complicating health issues. One is that I am now obese (thank you, prednisone), which I know contributes to inflammation. And I have another mildly inflammatory illness (but which never put my CRP this high). It's possible the high CRP is something cumulative going on.

Thanks for any thoughts you can share!

Jump to this post

Hello @throughhiker, Welcome to Connect. Sorry to hear you are struggling to lower the prednisone dosage but you are not alone. I think most of us with PMR have experienced what you are going through. I have no medical training or background but mostly I listened to my body when tapering down on prednisone. I kept a daily pain and dosage log and wrote down how my pain was on a scale of 1 to 10 and usually didn't taper to the next lower level if my pain was 3 or more. My 1 to 2 is I think what you might consider achy but it's something we have to decide for ourselves since pain is a little different for each of us. You might want to experiment by trying to taper by 1/2 mg of prednisone to see if it helps, or something that some members have mentioned is taking 1/2 of your dosage in the morning and 1/2 at bedtime. I never tried the second way.

I know weight can play a big part in making aches and pains worse since your body has more to carry around. I had the extreme weight gain (40+ pounds) the first round with PMR so the second time around when it came out of remission I made a few lifestyle changes that helped me limit the gain to around 5 pounds. I started eating healthier, made sure to do some kind of exercise daily (nothing extreme). What really got me thinking about nutrition to help with PMR was reading Dr. Terry Wahls story about her battle with MS and how she went from a wheel chair to riding a bike again by changing what she ate and focusing what helps the body on a cellular nutrition level – https://terrywahls.com/about/about-terry-wahls/. I still struggle with weight a little but I found some more help with my diet using alternate fasting. There is another group with discussions you might find helpful for the weight problem here – LCHF Living & Intermittent Fasting – https://connect.mayoclinic.org/group/lchf-living-intermittent-fasting/

Here's some information you may find helpful — Diet and Lifestyle Changes That Can Aid in the Treatment of Polymyalgia Rheumatica: https://arthritissj.com/diet-and-lifestyle-changes-that-can-aid-in-the-treatment-of-polymyalgia-rheumatica/

You mentioned that you were diagnosed in 2017 by your doctor. Have you ever been seen by a rheumatologist?

REPLY
@johnbishop

Hi @alanbruce — thanks for starting this discussion. I want to reiterate that I have no medical background or training and I'm only sharing my experiences with my two occurrences of polymyalgia rheumatica (PMR).

1. During time tapering off of prednisone how did I know it was time to go back on a higher dose of prednisone — I went back to the previous dose if the pain and stiffness was too much. This was subjective for me as I wanted to get off of prednisone and was willing to live with some minor pain.

2. How did the doctor know that the PMR was back – the second occurrence I told the doctor the PMR was back. I don't think it's something you forget after the first episode. The doctor order some blood tests to check the SED rate and C-reactive protein which are indicators according to Mayo Clinics Polymyalgia rheumatica – Diagnosis & Treatment:
https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545

3. At what point did I think it was back – It seemed to show up rather quickly the second time. I started having trouble with my arms falling asleep at night since I'm a side sleeper. Then I would be in a little more pain in the mornings when I woke up and my shoulders and hands seemed stiffer. After a few days I was pretty sure the PMR was back and setup an appointment for a checkup. It did take me a week or so to get a doctors appointment to follow up.

4. Standard tapering process for prednisone – this is the 64 thousand dollar question. For my first occurance, my rheumatologist gave me a tapering schedule and I think it was tapering weekly starting with 5 mg reduction but he also told me it depends on how I feel when the dosage was reduced. I remember staying on 15 and 10 mg for multiple weeks and longer when I got to 5 mg. I think it's an individual thing and tapering schedules should be discussed with your doctor. I found some handy tapering calendars you can print off here:
https://rheuminfo.com/physician-tools/prednisone-tapering-calendar/

I would like to tag other members who have posted about PMR to get their thoughts. @sherw @Robert43DAP @kiltlady @selrahc @sallyann @cyndee @nancestl @charlena @jchatchett @rolandhp and others — can you share your thoughts and experiences for Alan's questions?

John

Jump to this post

I am having a really hard. time with my PRM.Every time I get to 10 mg.I have to start over at 20 mg. With a relapse. I am on anti-inflammatory diet. I have had it a year now? I have start over at least 5 times and suggestions.?

REPLY
@123suew

I am having a really hard. time with my PRM.Every time I get to 10 mg.I have to start over at 20 mg. With a relapse. I am on anti-inflammatory diet. I have had it a year now? I have start over at least 5 times and suggestions.?

Jump to this post

Hello @123suew, What kind of a tapering schedule are you using weekly, bi-monthly, monthly? How much do you reduce the dosage when you taper? I struggled my first time around with PMR and worked with my rheumatologist who gave me a few suggestions to try. The key for me was tapering slowly. Initially I went down by 5 mg at a time but when I reached 10 mg, I had to change tactics. My rheumatologist prescribed 2.5 mg and 1 mg tablets of prednisone so I could taper slower.

Another thing that really helped me was to keep a daily log. Each morning I would write down how I felt pain wise on a scale of 1 to 10. The prednisone usually keep me at 2 or lower. If the pain was any higher than 2 and it was the day to lower my dose to the next lower dosage, I would add another few days on the same dose to see if I felt any better. I normally would taper to the next lower dose if I only had minor aches. I took 3 years tapering off of prednisone the first time around with the last six months going between 1 mg and 1/2 mg until I could finally stop taking prednisone.

You might want to discuss a tapering schedule with your rheumatologist just to see if they might have some more ideas of things to try.

REPLY

Thanks John! Did you count fatigue when you wrote your number in your daily log?

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@123suew

Thanks John! Did you count fatigue when you wrote your number in your daily log?

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I didn't count fatigue in my daily pain log but in retrospect I think it's a good idea to include how you are feeling along with the aches and pain. It's all part of the equation 🙂

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In my log I have a comments area that I indicate briefly what I have done for the day and whether what I did impacted on me.

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@legendts

In my log I have a comments area that I indicate briefly what I have done for the day and whether what I did impacted on me.

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That’s another great idea to include in a daily tapering log!

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@johnbishop

I didn't count fatigue in my daily pain log but in retrospect I think it's a good idea to include how you are feeling along with the aches and pain. It's all part of the equation 🙂

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Thanks so much! You are such an asset to the site! 123sw

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My GP has referred me on to Rhumatologist and thinks I have PMR. Unfortunately I have to wait one more week for appointment and I’m dying. Usually very active person but if I walk couple blocks now I’m in so much pain. Had sinus issues this Spring and right after, the inflamed body parts. With prednisone, will I recover or does it normally keep coming back?

REPLY
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