CRP and SED levels

Posted by aliceoleary @aliceoleary, Nov 1, 2021

Hello – I am so happy to find this forum. There is nothing better than actual experience to help us make decisions about medications, diet, etc.

I was diagnosed in June with PMR. My CRP was 165. My SED rates have always been normal. The Medrol brought the CRP down rather quickly to the very high end of normal. It went up slightly as we began to taper so we are now playing that game.

My question is the CRP level of 165. I haven't seen anyone in this forum mention a level that high. Does anyone have any information to share on this? Thank you.

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

Hi @aliceoleary, Welcome to Connect. When my PMR came out of remission in 2016 my CRP was 13.8 MG/L with the normal range being <= 8.0 MG/L. I don't remember what my CRP or SED rate was when I was initially diagnosed with PMR in 2007. Both occurrences I was started on 20mg prednisone which got rid of all the pain within a few hours of starting the drug. It took me 3-1/2 years to taper off of prednisone the first time but only a year and half the second time around. I think this is because when it came out of remission I knew I needed to make some lifestyle changes and started eating healthier and doing more exercise.

Here's some information that might be helpful if you are looking to make any changes – What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683

Hopefully other members can share their experience of high CRP levels. Here's some information on what high levels mean that may be helpful.

— What does it mean if you have a high C-reactive protein?: https://www.medicalnewstoday.com/articles/322138
— 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/

Are you seeing a rheumatologist or were you diagnosed by your primary care doctor?

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Your CRP was very high, how were you even able to move?
I am so happy that you are doing better.

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@johnbishop

Hi @aliceoleary, Welcome to Connect. When my PMR came out of remission in 2016 my CRP was 13.8 MG/L with the normal range being <= 8.0 MG/L. I don't remember what my CRP or SED rate was when I was initially diagnosed with PMR in 2007. Both occurrences I was started on 20mg prednisone which got rid of all the pain within a few hours of starting the drug. It took me 3-1/2 years to taper off of prednisone the first time but only a year and half the second time around. I think this is because when it came out of remission I knew I needed to make some lifestyle changes and started eating healthier and doing more exercise.

Here's some information that might be helpful if you are looking to make any changes – What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683

Hopefully other members can share their experience of high CRP levels. Here's some information on what high levels mean that may be helpful.

— What does it mean if you have a high C-reactive protein?: https://www.medicalnewstoday.com/articles/322138
— 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/

Are you seeing a rheumatologist or were you diagnosed by your primary care doctor?

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The highest my CRP level was 42.2 on Dec. 21st/21. I go for repeat blood work tomorrow Jan. 14/22. About a week and a half into 40 mg. of Prednisone. Yesterday I started with bad jitters, high anxiety (which I have anyway) and very angry (which is not me). Because it's affecting my stomach, I've stopped with the Ibuprofen. BUT, when I was being diagnosed the neurologist asked me if I had jaw pain and at that time I did not. I do have a history of TMJ. Also my job is talking for 10 hours per day and no jaw pain, although I was taking Ibuprofen. My right jaw hurts when I chew and yawn, or open my mouth wider than normal, and my ear feels great pressure. This for 2 days now; this coincidentally with the stopping of Ibuprofen. So this morning I took a Claritan to see if it relieves the pressure in my ear. When I read in the afternoons, my eyes start stinging and vision with my glasses out of wack. Almost like when it's time for a new glasses prescription, but not that prominent. Do we think this is winter allergies or possibly GTA, as head still aches a lot, especially in the afternoons??? Am I overreacting or is it worth mentioning to the neurologist?? Anyone else experienced any of this?

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@milld835

The highest my CRP level was 42.2 on Dec. 21st/21. I go for repeat blood work tomorrow Jan. 14/22. About a week and a half into 40 mg. of Prednisone. Yesterday I started with bad jitters, high anxiety (which I have anyway) and very angry (which is not me). Because it's affecting my stomach, I've stopped with the Ibuprofen. BUT, when I was being diagnosed the neurologist asked me if I had jaw pain and at that time I did not. I do have a history of TMJ. Also my job is talking for 10 hours per day and no jaw pain, although I was taking Ibuprofen. My right jaw hurts when I chew and yawn, or open my mouth wider than normal, and my ear feels great pressure. This for 2 days now; this coincidentally with the stopping of Ibuprofen. So this morning I took a Claritan to see if it relieves the pressure in my ear. When I read in the afternoons, my eyes start stinging and vision with my glasses out of wack. Almost like when it's time for a new glasses prescription, but not that prominent. Do we think this is winter allergies or possibly GTA, as head still aches a lot, especially in the afternoons??? Am I overreacting or is it worth mentioning to the neurologist?? Anyone else experienced any of this?

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@milld835, I have no medical training or background but if it were me, I would definitely talk with my rheumatologist or primary care doctor about your symptoms. If you also have Giant Cell Arteritis (GCA) along with PMR you want to make sure it's being treated. A lot of the symptoms you mentioned having are listed with the condition here – Giant cell arteritis – Symptoms and causes – Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758

Both my primary care doctor and my rheumatologist asked me specifically about symptoms relating to jaw pain, pain around the temples, vision problems, scalp tenderness, headaches and more. I would contact your doctor as soon as possible.

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@johnbishop

@milld835, I have no medical training or background but if it were me, I would definitely talk with my rheumatologist or primary care doctor about your symptoms. If you also have Giant Cell Arteritis (GCA) along with PMR you want to make sure it's being treated. A lot of the symptoms you mentioned having are listed with the condition here – Giant cell arteritis – Symptoms and causes – Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758

Both my primary care doctor and my rheumatologist asked me specifically about symptoms relating to jaw pain, pain around the temples, vision problems, scalp tenderness, headaches and more. I would contact your doctor as soon as possible.

Jump to this post

I agree John and I've since contacted his office this morning. Correction: I am on 20 mg of Prednisone, not 40. Thanks so much for your reply.

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@milld835

I agree John and I've since contacted his office this morning. Correction: I am on 20 mg of Prednisone, not 40. Thanks so much for your reply.

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He agreed that I should be checkout for GCA and I will be possibly going to opthamologist for biopsy. It believe it's my ears though; he would rather find out it's nothing than wait and find out it's something. His words and I agree. Also, he's trying to expedite my referral to the rheumatologist. My doctor right now is a neurologist. My family doctor has retired. He's very thorough and I like him a lot. Thanks John.

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@milld835

He agreed that I should be checkout for GCA and I will be possibly going to opthamologist for biopsy. It believe it's my ears though; he would rather find out it's nothing than wait and find out it's something. His words and I agree. Also, he's trying to expedite my referral to the rheumatologist. My doctor right now is a neurologist. My family doctor has retired. He's very thorough and I like him a lot. Thanks John.

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It sounds like your doctor is a "keeper". I've had a few like that over the years but still think of the days growing up when we had a family doctor that would make house calls. I think doctors now days are so busy and time constrained that it is hard for them to spend the extra time to get to know patients and actually listen so when you have a really good one it is extra special.

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It took 5 months to find one who would listen and even take me seriously. Dr. Taylor genuinely listens. Have a good day John.

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@milld835

The highest my CRP level was 42.2 on Dec. 21st/21. I go for repeat blood work tomorrow Jan. 14/22. About a week and a half into 40 mg. of Prednisone. Yesterday I started with bad jitters, high anxiety (which I have anyway) and very angry (which is not me). Because it's affecting my stomach, I've stopped with the Ibuprofen. BUT, when I was being diagnosed the neurologist asked me if I had jaw pain and at that time I did not. I do have a history of TMJ. Also my job is talking for 10 hours per day and no jaw pain, although I was taking Ibuprofen. My right jaw hurts when I chew and yawn, or open my mouth wider than normal, and my ear feels great pressure. This for 2 days now; this coincidentally with the stopping of Ibuprofen. So this morning I took a Claritan to see if it relieves the pressure in my ear. When I read in the afternoons, my eyes start stinging and vision with my glasses out of wack. Almost like when it's time for a new glasses prescription, but not that prominent. Do we think this is winter allergies or possibly GTA, as head still aches a lot, especially in the afternoons??? Am I overreacting or is it worth mentioning to the neurologist?? Anyone else experienced any of this?

Jump to this post

Do not sit on this – tell your physician immediately as the jaw pain when chewing, earache, headache and vision problems are classic symptoms of Giant Cell Arteritis, the companion disorder to PMR. I have it and my mother-in-law had it. Lack of proper treatment can result in blindness or stroke. My doctor told me to get to an ER immediately if I had vision problems. You will most likely need a biopsy of your temporal artery, but treatment, usually a higher dosage of prednisone or other drug, may be started prior to the definitive diagnosis. All the best.

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@tsc

Do not sit on this – tell your physician immediately as the jaw pain when chewing, earache, headache and vision problems are classic symptoms of Giant Cell Arteritis, the companion disorder to PMR. I have it and my mother-in-law had it. Lack of proper treatment can result in blindness or stroke. My doctor told me to get to an ER immediately if I had vision problems. You will most likely need a biopsy of your temporal artery, but treatment, usually a higher dosage of prednisone or other drug, may be started prior to the definitive diagnosis. All the best.

Jump to this post

Thank you for this info. Yes I had the blood work done earlier this morning. The neurologist is referring me to an opthamologist. Fingers crossed. All the best to you as well.

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@milld835

Thank you for this info. Yes I had the blood work done earlier this morning. The neurologist is referring me to an opthamologist. Fingers crossed. All the best to you as well.

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You're welcome. I hope it works out.

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On November 2,2021, when I was taken to emergency with so much pain I couldn’t move, my CRP measure was 74.3. By Nov.10 it was up to 152.8. With 50 mg. of prednisone and 75 mg. of Diclofenac-Misoprostol prescribed, it came down to 25 by Nov.17. Still working on finding the right balance.

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