PMR initial diagnosis: Can there be an underlying disease?

Posted by charlena @charlena, Sep 10 12:41pm

My husband was diagnosed with PMR several years ago and placed on prednisone. It no longer seems to help him. Just wondering, has anyone here been initially diagnosed with PMR only to be re-diagnosed with a different disease or have an underlying disease discovered? Also, does anyone feel they have been diagnosed with PMR because the doctor can’t figure out what the problem is and diagnosed you with PMR because you have some of the symptoms of PMR? Thank you.

Hello @charlena, You will notice I changed the title of your discussion a little to reflect your main question. I'm sorry to hear that the prednisone no longer seems to be helping your husband PMR. Here's an article you may find helpful – "Polymyalgia rheumatica is an inflammatory condition that causes a particular pattern of joint pain and stiffness, most commonly in older people. It is a rheumatic disorder closely associated, and often co-existing, with giant cell arteritis. Diagnosis is based on the patient’s clinical features, supported by laboratory investigations." — Polymyalgia rheumatica: Look before you leap: https://bpac.org.nz/BPJ/2013/June/polymyalgia-rheumatica.aspx

If I am understanding you correctly, does your doctor think your husband still has PMR but the prednisone no longer helps, or does the doctor think it might be something else? There are other conditions that mimic polymyalgia rheumatica (PMR) but a rheumatologist normally makes the diagnosis. Was your husband seen by a rheumatologist?

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@charlena I can relate to your question about Polymyalgia Rheumatica (PMR). as John ,@johnbishop mentioned PMR can mimic many other conditions. I have seen it described as the "great Imitator'. Not only does it mimic other conditions, PMR is often a diagnosis of exclusion. after other conditions have been ruled out. There is not one test you can run and say you have PMR, that makes it difficult to diagnose. I have been on prednisone since January for suspected PMR, I had one elevated inflammatory marker ,C-reactive protein (CRP). another important inflammatory marker is Erythrocyte sedimentation Rate (ESR) , however these blood tests are also elevated in many other conditions. I have not been able to titrate down on my prednisone without getting continuous widespread pain. I do have fatigue, I do not have joint stiffness. I did have spine surgery which can cause shoulder pain. I did not respond rapidly to prednisone (many people will say that got relief the same day as starting the prednisone) The more time I spend on Mayo Connect I realize that often PMR is not the final diagnosis months down the road , through no fault of anyone. Follow up with a rheumatologist as John suggested. Google conditions that mimic PMR or perhaps John can research an article on other conditions that mimic PMR. Good Luck David

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I was diagnosed with PMR and it was backed up by an elevated sed rate (64) and CPR. I took prednisone for almost 1 1/2 years and I hated it. I had all of the side affects at different stages. My PCP followed with frequent blood draws and slowly, I could take less. In January, I convinced him to let me quit when I was at 1 mg. and blood work was close to perfect. I am not sure I had it and I just thought it was the result of working over a desk for many years. I thought it was just abnormal me. I hope your husband will find an answer and probably should see a rheumatologist even though I did not.

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@johnbishop

Hello @charlena, You will notice I changed the title of your discussion a little to reflect your main question. I'm sorry to hear that the prednisone no longer seems to be helping your husband PMR. Here's an article you may find helpful – "Polymyalgia rheumatica is an inflammatory condition that causes a particular pattern of joint pain and stiffness, most commonly in older people. It is a rheumatic disorder closely associated, and often co-existing, with giant cell arteritis. Diagnosis is based on the patient’s clinical features, supported by laboratory investigations." — Polymyalgia rheumatica: Look before you leap: https://bpac.org.nz/BPJ/2013/June/polymyalgia-rheumatica.aspx

If I am understanding you correctly, does your doctor think your husband still has PMR but the prednisone no longer helps, or does the doctor think it might be something else? There are other conditions that mimic polymyalgia rheumatica (PMR) but a rheumatologist normally makes the diagnosis. Was your husband seen by a rheumatologist?

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Prednisone was discontinued due to his elevated sugar level.

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@johnbishop

Hello @charlena, You will notice I changed the title of your discussion a little to reflect your main question. I'm sorry to hear that the prednisone no longer seems to be helping your husband PMR. Here's an article you may find helpful – "Polymyalgia rheumatica is an inflammatory condition that causes a particular pattern of joint pain and stiffness, most commonly in older people. It is a rheumatic disorder closely associated, and often co-existing, with giant cell arteritis. Diagnosis is based on the patient’s clinical features, supported by laboratory investigations." — Polymyalgia rheumatica: Look before you leap: https://bpac.org.nz/BPJ/2013/June/polymyalgia-rheumatica.aspx

If I am understanding you correctly, does your doctor think your husband still has PMR but the prednisone no longer helps, or does the doctor think it might be something else? There are other conditions that mimic polymyalgia rheumatica (PMR) but a rheumatologist normally makes the diagnosis. Was your husband seen by a rheumatologist?

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His doctor is a rheumatologist. He has an appointment on Monday, and I will be allowed to go with him. I am hoping that this group can help me ask the doctor the right questions. I have contacted his internist and asked that he confer with the rheumatologist about this condition to determine if he needs to change his diabetes medication.

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@sharenb

His doctor is a rheumatologist. He has an appointment on Monday, and I will be allowed to go with him. I am hoping that this group can help me ask the doctor the right questions. I have contacted his internist and asked that he confer with the rheumatologist about this condition to determine if he needs to change his diabetes medication.

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I just finished reading the story about John’s wife and great diagnosis of giant cell arteritus. That will be first question when we see the doctor. My husband has experienced jaw pain a couple of times recently and has said he thinks his vision has changed slightly. He has not had headaches. A few years ago, the ophthalmologist notice something behind his eye and suggested that he have an MRI or CT (I can’t remember which). His internist was not concerned with the results at this time. I will mention this to the doctor.

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@sharenb

I just finished reading the story about John’s wife and great diagnosis of giant cell arteritus. That will be first question when we see the doctor. My husband has experienced jaw pain a couple of times recently and has said he thinks his vision has changed slightly. He has not had headaches. A few years ago, the ophthalmologist notice something behind his eye and suggested that he have an MRI or CT (I can’t remember which). His internist was not concerned with the results at this time. I will mention this to the doctor.

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@sharenb, That is a great question about giant cell arteritus (GCA). In my followup exams with my primary care doc for my PMR, the doctor would always feel my temples and jaw line and ask if I had any kind of pain or discomfort there. He told me that GCA is often a major concern when you have PMR. The biggest question I had was how long do I have to take the prednisone and how soon can I start to taper off. I was worried about the long term side effects for me. The goal for the prednisone is to get the pain under control and then you can start to taper off slowly while keeping the pain under control.

There is another discussion for GCA that you may want to read and learn what others have shared — Medications for Temporal Arteritis/Giant Cell Arteritis (GCA): https://connect.mayoclinic.org/discussion/temperol-arteritis-or-giant-cell-arteritis/

There is also some helpful information on Lifestyle and Home Remedies listed under the Giant cell arteritis – Diagnosis and treatment – Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/diagnosis-treatment/drc-20372764

It's great that you will be going with your husband and have a list of questions for the doctor. If it were me, I would start with your question and maybe add a few more.
— If he has GCA, what medication is the best treatment?
— How long will he need to take the medication? Is there a recommended schedule for tapering off the medication?
— What are the side effects we need to watch for with the medication?
— What lifestyle or dietary changes should be made? Physical therapy, exercise, foods to avoid or eat…

Hope this helps. John

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Giant Cell Arteritis is moving up on the list of concerns in my case. Headaches and stabbing, random pain in temples, forehead, and jaw have been more frequent. After several days on Prednisone 40mg, they stoped. As I tapered, they began to come back, and when I had been at 20mg for 3 days, the headaches were back with a vengeance. I expect a recommendation for biopsy at my upcoming appointment.

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Thanks for your replies, John and desertsooner. I will definitely asks the questions John suggested. My question for desertsooner is, what biopsy is done for GSA?

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@sharenb

Thanks for your replies, John and desertsooner. I will definitely asks the questions John suggested. My question for desertsooner is, what biopsy is done for GSA?

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@sharenb Mayo Clinic lists the criteria for diagnosing giant cell arteritis, including biopsy (small sample) of the temporal artery here — Giant cell arteritis – Diagnosis and treatment – Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/diagnosis-treatment/drc-20372764

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@johnbishop

@sharenb Mayo Clinic lists the criteria for diagnosing giant cell arteritis, including biopsy (small sample) of the temporal artery here — Giant cell arteritis – Diagnosis and treatment – Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/diagnosis-treatment/drc-20372764

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@sharenb Have your notes in a spiral notebook. Brief your husband on all your questions so that he can ask them, if possible. Let the doctors know that you are a team and you’re going to attack this together. Hope this helps!

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I will be going to the doctor with him to the doctor today with the questions and my chart of his weight, pain and swelling levels, etc. I am astounded by the rapid progression of his symptoms. I am grateful for everyone who has responded to my questions. Thanks.

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@sharenb

I will be going to the doctor with him to the doctor today with the questions and my chart of his weight, pain and swelling levels, etc. I am astounded by the rapid progression of his symptoms. I am grateful for everyone who has responded to my questions. Thanks.

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@sharenb Hope all goes well today, We’re all with you!

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Hello Karen @karinaph, I would like to welcome you to Mayo Clinic Connect and thank you for the private message. I thought I would answer your private message in this recently created discussion PMR initial diagnosis: Can there be an underlying disease?. If you click the VIEW & REPLY button at the bottom of the email notification it will take you to this discussion where you can meet other members discussing Polymyalgia Rheumatica (PMR) and Giant Cell Arteritis (GCA).

You mentioned in your message that you have been diagnosed with PMR and they suspect you have GCT. You are currently on 14 mg of prednisone, tried to taper and symptoms roared back along with GCT. You also mentioned only being able to do Zoom calls with a rheumatologist and have not had any blood tests since Feb. It took me awhile to figure out what you meant by you feel like you are wallowing in the Sargasso Sea 🙂. I didn't know it's the only sea without a land boundary. That's a great way to describe the feeling when PMR or GCA is out of control…ouch!

I think you might find the post I created earlier in this discussion helpful – https://connect.mayoclinic.org/discussion/pmr-initial-diagnosis-1/?pg=1#comment-425216. @sharenb @desertsooner @joybringer1 @phoenix0509 and other members may have some suggestions to share with you also.

You also mentioned you were looking for some help in navigating the discussion board. There is a great Get Started on Connect guide that is available by clicking the link in the left column of the footer section on any Connect page. Here is the direct link to the guide – https://connect.mayoclinic.org/get-started-on-connect/

Karen are you also having pain in the temple area, jaw or scalp? Those are symptoms of GCA.

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@johnbishop

Hello Karen @karinaph, I would like to welcome you to Mayo Clinic Connect and thank you for the private message. I thought I would answer your private message in this recently created discussion PMR initial diagnosis: Can there be an underlying disease?. If you click the VIEW & REPLY button at the bottom of the email notification it will take you to this discussion where you can meet other members discussing Polymyalgia Rheumatica (PMR) and Giant Cell Arteritis (GCA).

You mentioned in your message that you have been diagnosed with PMR and they suspect you have GCT. You are currently on 14 mg of prednisone, tried to taper and symptoms roared back along with GCT. You also mentioned only being able to do Zoom calls with a rheumatologist and have not had any blood tests since Feb. It took me awhile to figure out what you meant by you feel like you are wallowing in the Sargasso Sea 🙂. I didn't know it's the only sea without a land boundary. That's a great way to describe the feeling when PMR or GCA is out of control…ouch!

I think you might find the post I created earlier in this discussion helpful – https://connect.mayoclinic.org/discussion/pmr-initial-diagnosis-1/?pg=1#comment-425216. @sharenb @desertsooner @joybringer1 @phoenix0509 and other members may have some suggestions to share with you also.

You also mentioned you were looking for some help in navigating the discussion board. There is a great Get Started on Connect guide that is available by clicking the link in the left column of the footer section on any Connect page. Here is the direct link to the guide – https://connect.mayoclinic.org/get-started-on-connect/

Karen are you also having pain in the temple area, jaw or scalp? Those are symptoms of GCA.

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Thank you John for your kind and thorough reply. Sorry for the biological reference, I studied marine biology and was Intregued that “sea” within an ocean is a little understood place in the Atlantic. As far as my symptoms, I’m keeping a sharp eye on the GCA stuff, as I know this is very serious. I did have jaw stiffness, plain, temple pain, scalp pain and immediately contacted MD and she upped by meds back to the 15. Pain subsided within a few days. The muscle cramping in weird places still plague me, and never know when it will hit. I just wish there were other “treatments” instead of steroids, but I dont’ want methotrexate…. I’ll check out your post and keep up on what others are sharing. I’m feeling like this was triggered by getting the Shingrix vaccine. Btw, I am not an antivax person. Trained in bilology, married to a research scientist, I trust science. But with that said, the symptoms came on quickly after the second vaccine… thanks again John.

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