Was I properly diagnosed with PMR?

Posted by tennis1234567 @tennis1234567, Jul 20, 2021

Went to the doctor in May of this year complaining of soreness on both legs between the buttocks and hamstring. Could especially feel it when sitting down. Doctor did a Sed rate test and I was 18 when the scale was 0-10. Put me on 40mgs of Prednisone and all pain was gone and my Sed rate dropped to 6. My symptoms are different than most. I generally feel fine when I wake up. It seems the longer I am on my feet the more pain I have. The pain has moved into my hips and it is quite painful to stand or walk. Still it does come and go. I am just not sure I was properly diagnosed. Thoughts?

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Hello @tennis1234567, Welcome to Connect, an online community where patients share their experiences, find support and exchange information with others. My PMR is currently in remission but I was prescribed 20mg prednisone for both occurrences and it took care of the pain but was difficult to taper off due to some pain returning during the taping off process — 3-1/2 years to taper off the first time, 1-1/2 years to taper off the second time. My thoughts as a patient are each of us are different when it comes to pain and tolerance and this is generally a disease that affects adults 50 or older. When it comes to diagnosing PMR, a rheumatologist is the best type of doctor to see.

"There's no specific test to diagnose polymyalgia rheumatica. Your doctor will make a diagnosis after listening to you talk about the history of your symptoms and by carrying out a physical examination. You'll also have blood tests to check for any inflammation in your body, and to rule out other conditions." — Polymyalgia rheumatica (PMR) | Causes, symptoms, treatments: https://www.versusarthritis.org/about-arthritis/conditions/polymyalgia-rheumatica-pmr/

If you still have some pain and you are on 40mg prednisone, you may want to ask your doctor or rheumatologist if there is something else going on. Have you discussed your thoughts with your doctor or thought about getting a second opinion?

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@johnbishop

Hello @tennis1234567, Welcome to Connect, an online community where patients share their experiences, find support and exchange information with others. My PMR is currently in remission but I was prescribed 20mg prednisone for both occurrences and it took care of the pain but was difficult to taper off due to some pain returning during the taping off process — 3-1/2 years to taper off the first time, 1-1/2 years to taper off the second time. My thoughts as a patient are each of us are different when it comes to pain and tolerance and this is generally a disease that affects adults 50 or older. When it comes to diagnosing PMR, a rheumatologist is the best type of doctor to see.

"There's no specific test to diagnose polymyalgia rheumatica. Your doctor will make a diagnosis after listening to you talk about the history of your symptoms and by carrying out a physical examination. You'll also have blood tests to check for any inflammation in your body, and to rule out other conditions." — Polymyalgia rheumatica (PMR) | Causes, symptoms, treatments: https://www.versusarthritis.org/about-arthritis/conditions/polymyalgia-rheumatica-pmr/

If you still have some pain and you are on 40mg prednisone, you may want to ask your doctor or rheumatologist if there is something else going on. Have you discussed your thoughts with your doctor or thought about getting a second opinion?

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Thank you John for your reply. I didn't give the entire story. I started at 40mgs then retested after 2 weeks and my sed rate dropped to 6 on a scale where less than 10 is good. They had me drop to 30mgs and again tested after 2 weeks and it went up to 9 but they dropped me again to 20mgs. As I have AFIB also, I contacted my doctor as my AFIB was going out of control we decided to drop down to 5mgs. It too me about 2 weeks to get to 5mgs and of course the pain came back with a vengeance and my sed rate went up to 24. By the way before I started taking Prednisone my Sed rate was 18. So now I am at 5mgs, I have a fair amount of pain in my hips and lower back sometimes but my pain is not like everyone else. My pain starts after I start moving around verses right away from getting up in the morning or sitting for a period of time. Also, my pain pretty much goes away when I sit down or lay down so I am really wondering if I have PMR. I did get an MRI of my back and although I do have some stenosis, scoliosis, and arthritis the Doctor did not feel it was the cause of my symptoms. I do have an appointment with a rheumatologist but is is not until October 7. Any other thoughts would be appreciated as I really don't know what to do as increasing Prednisone would probably make me feel better but it is masking something else. Thanks!

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@tennis1234567

Thank you John for your reply. I didn't give the entire story. I started at 40mgs then retested after 2 weeks and my sed rate dropped to 6 on a scale where less than 10 is good. They had me drop to 30mgs and again tested after 2 weeks and it went up to 9 but they dropped me again to 20mgs. As I have AFIB also, I contacted my doctor as my AFIB was going out of control we decided to drop down to 5mgs. It too me about 2 weeks to get to 5mgs and of course the pain came back with a vengeance and my sed rate went up to 24. By the way before I started taking Prednisone my Sed rate was 18. So now I am at 5mgs, I have a fair amount of pain in my hips and lower back sometimes but my pain is not like everyone else. My pain starts after I start moving around verses right away from getting up in the morning or sitting for a period of time. Also, my pain pretty much goes away when I sit down or lay down so I am really wondering if I have PMR. I did get an MRI of my back and although I do have some stenosis, scoliosis, and arthritis the Doctor did not feel it was the cause of my symptoms. I do have an appointment with a rheumatologist but is is not until October 7. Any other thoughts would be appreciated as I really don't know what to do as increasing Prednisone would probably make me feel better but it is masking something else. Thanks!

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One thing that I think has helped me is to make a few lifestyle changes in what I eat and try to avoid. I have lower back issues that make it hard for me to walk any distance and some pain in my hips but it's more from degenerative arthritis. Here's some information in case you haven't seen it – https://arthritissj.com/diet-and-lifestyle-changes-that-can-aid-in-the-treatment-of-polymyalgia-rheumatica/

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@tennis1234567

Thank you John for your reply. I didn't give the entire story. I started at 40mgs then retested after 2 weeks and my sed rate dropped to 6 on a scale where less than 10 is good. They had me drop to 30mgs and again tested after 2 weeks and it went up to 9 but they dropped me again to 20mgs. As I have AFIB also, I contacted my doctor as my AFIB was going out of control we decided to drop down to 5mgs. It too me about 2 weeks to get to 5mgs and of course the pain came back with a vengeance and my sed rate went up to 24. By the way before I started taking Prednisone my Sed rate was 18. So now I am at 5mgs, I have a fair amount of pain in my hips and lower back sometimes but my pain is not like everyone else. My pain starts after I start moving around verses right away from getting up in the morning or sitting for a period of time. Also, my pain pretty much goes away when I sit down or lay down so I am really wondering if I have PMR. I did get an MRI of my back and although I do have some stenosis, scoliosis, and arthritis the Doctor did not feel it was the cause of my symptoms. I do have an appointment with a rheumatologist but is is not until October 7. Any other thoughts would be appreciated as I really don't know what to do as increasing Prednisone would probably make me feel better but it is masking something else. Thanks!

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Hi tennis1234567, It's too bad you have to wait do long to see the Rheumatologist. I can communicate with mine via email in between appointments. Is that possible for you? A medical textbook I have says both PMR and GCA should respond dramatically to proper dosages of prednisone and if they don't, physician should pursue other diagnosis as infection, connective tissue disorder, malignancy, hypothyroidism. Terrible morning stiffness and pain is a classic PMR symptom. In my case, it persisted through movement and lasted most of the day. At night I felt a little better. Keep a record of your symptoms with dates so you have it to give the doctor. My aunt had GCA and was on high dosage of prednisone. It masked an abscess she had in her gastrointestinal tract, which was not discovered until very late in her treatment. Good luck.

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@tennis1234567

Thank you John for your reply. I didn't give the entire story. I started at 40mgs then retested after 2 weeks and my sed rate dropped to 6 on a scale where less than 10 is good. They had me drop to 30mgs and again tested after 2 weeks and it went up to 9 but they dropped me again to 20mgs. As I have AFIB also, I contacted my doctor as my AFIB was going out of control we decided to drop down to 5mgs. It too me about 2 weeks to get to 5mgs and of course the pain came back with a vengeance and my sed rate went up to 24. By the way before I started taking Prednisone my Sed rate was 18. So now I am at 5mgs, I have a fair amount of pain in my hips and lower back sometimes but my pain is not like everyone else. My pain starts after I start moving around verses right away from getting up in the morning or sitting for a period of time. Also, my pain pretty much goes away when I sit down or lay down so I am really wondering if I have PMR. I did get an MRI of my back and although I do have some stenosis, scoliosis, and arthritis the Doctor did not feel it was the cause of my symptoms. I do have an appointment with a rheumatologist but is is not until October 7. Any other thoughts would be appreciated as I really don't know what to do as increasing Prednisone would probably make me feel better but it is masking something else. Thanks!

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I am wondering if your doc could order more specific wide ranging tests of other prgan invovement. like a complete CBC and white count and a urinalysis to rule out kidney or bladder infections or other things underly your rising inflammation. .

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What a great idea! My urine actually has not been clear but I thought it was due to the Prednisone. Thank you for the suggestion! I am seeing him tomorrow morning.

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@tsc

Hi tennis1234567, It's too bad you have to wait do long to see the Rheumatologist. I can communicate with mine via email in between appointments. Is that possible for you? A medical textbook I have says both PMR and GCA should respond dramatically to proper dosages of prednisone and if they don't, physician should pursue other diagnosis as infection, connective tissue disorder, malignancy, hypothyroidism. Terrible morning stiffness and pain is a classic PMR symptom. In my case, it persisted through movement and lasted most of the day. At night I felt a little better. Keep a record of your symptoms with dates so you have it to give the doctor. My aunt had GCA and was on high dosage of prednisone. It masked an abscess she had in her gastrointestinal tract, which was not discovered until very late in her treatment. Good luck.

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Thanks TSC for your comments and suggestions. I have no way to email my Rheumatologist as I haven't even seen her yet. I have a meeting with my Doctor (PA) tomorrow and will suggest we look at other causes of the inflammation. I have also started a journal to keep track of all that is going on with me. Things seem to keep changing on a daily basis.

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I hope things get better for you. A good diagnostician can make all the difference. I heard a doctor talking about his craft said there are splitters and lumpers. The splitters go off and chase every symptom down a different path while the lumpers look at all the symptoms lumped together and try to figure out what is wrong.

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Well I went to see the Doctor (PA) today and he decided to take my case to his boss (Internal Medicine) and they now have decided I do NOT have PMR. That is great news of course but they feel I have issues with my back and are sending me to an Neural surgeon. Thanks to all that commented as it was your information, nudging for answers, and general comments that put me on this path. I am now able to ween myself from Prednisone. Thanks again and good luck to all.

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The very best to you. I am sooooo happy for you. Just keep nudging them until you are properly diagnosed.

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@tennis1234567

Well I went to see the Doctor (PA) today and he decided to take my case to his boss (Internal Medicine) and they now have decided I do NOT have PMR. That is great news of course but they feel I have issues with my back and are sending me to an Neural surgeon. Thanks to all that commented as it was your information, nudging for answers, and general comments that put me on this path. I am now able to ween myself from Prednisone. Thanks again and good luck to all.

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Wishing you the best. Getting a diagnosis, then proper treatment can be such a relief.

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I also have pain after I am up and moving, not when I wake up. I also have same back problems as you, plus arthritis in my neck. I live on Tylenol, as I have stage 4 kidney disease as well as diabetes, and fibromyalgia. I have to be very careful about medications I take because of kidney disease. It is a mystery to me as to whether I have PMR or something else. My sed rate and CRP have been elevated, sometimes higher, sometimes lower, for 3 years! I also have giant cell arthritis. I am mostly disabled because of whatever I have, plus the fibromyalgia. I would be very interested in hearing from you if the doctors are able to come up with a different diagnosis.

The best of luck to you; may your pain subside soon!

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