PMR initial diagnosis: Can there be an underlying disease?

Posted by charlena @charlena, Sep 10, 2020

<p>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.</p>

@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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I can identify with Karen's concern of having few treatment options with PMR that are effective without a lot of side effects. Interesting, I also believe that the Shingrix vaccine triggered my PMR in February of this year (and has a hospital pharmacist I am very pro-vaccine but would of questioned getting my 2nd Shingrix dose had I been aware of the PMR risk). I had the 1st shingles vaccine (Zostavax) about 5 years ago ( I was 57) and got the Shingrix due to greater protection and response. Not sure if getting both put me at greater risk for PMR
I also discussed methotrexate with my rheumatologist but decided only to add or change to if prednisone was not working. I've had GI issues in the past add know that can be an issue with methotrexate. Thankfully, I have been able to taper down from 20 mg to 6 mg currently with only one flare where I stayed at 10 mg for an additional 2 weeks. But we all respond differently and have to fight that autoimmune response to be able to function.
Wishing you the best and appreciate this forum. Brian

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Thanks, David, for your reply. My husband has been seeing a Rheumatologist for the past 4 years. He was one of those that got immediate relief upon taking prednisone. He had been doing pretty good on being able to taper down until he had back surgery last year. The doctor took him off his prednisone due to it causing delaying in healing. I had always heard that you MUST taper off prednisone, not just stop taking all at once. Unfortunately, I didn't think about it at that time or I would have questioned it……. He is to the point where he can't taper any at all without having severe all over pain. We did discuss w/Rheumatologist asking if he thought it might be time to look at other diseases. His response was that my husband needed to be off the prednisone for him to be able to look for other diseases…….. Not sure what to make of that.

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@karinaph

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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Before joining Connect I was going to ask my doc for the shingles vaccine since I turned 55 in July. I’m going to hold off now and learn more from you wise folk before pursuing.

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@irishdancer

Hello, I am new to the PMR diagnosis and new to this group. Thank you for your support and insight provided to the members.

I have been a very active and healthy 65 year old female except for having some degenerative disc disease in my lower back, eczema flare ups and Irritable Bowel Syndrome …until, I woke up the first part of April with excruciating pain in my shoulders and upper back. A few days later my hips, thighs and eventually my knees ached horribly especially in the morning or after sitting for an extended time. i suspected PMR and had a conversation with my GP who dismissed the possibility and put me on gabapentin because i was also having nerve pain in my leg that prevented me from sleeping.

The pain in my shoulders and hips continued to get worse, so i made an appointment with a Rheumatologist who did ESR and CRP (normal) and xrays of my hips and shoulders (normal). Although my blood work was in the normal range, I was a bit persistent with trying a course of prednisone because i know that a small % of people can have normal values. In addition, i was aware of how responsive PMR is to steroid treatment. I started with 10 mg and within 24 hours i had no shoulder pain and within 36 no hip or thigh pain. This week, after 4 weeks of being on 10 mg, i will taper 1 mg a month.

My question is if that is a reasonable treatment strategy since i have no pain whatsoever. I would certainly prefer not to be on a steroid any longer than i have to be. My other question, is because i was sort of persistent with obtaining the PMR diagnosis, could it be something else that i am missing? All autoimmune markers were normal too (no rheumatoid arthritis, lupus, etc. etc.) All other blood work is normal.

Thank you for your time and assistance.

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I too had semi “normal” blood results. I think one factor was out of wack, but didn’t scream PMR. They chose to try me on prednisone to see if I responded and I did. Though in my efforts to taper I have not been successful. Actually having GCA, giant cell arteritis symptoms ( sedimentation rate did not correlate), but symptoms were severe and exact. So, I’m back up to 14 and will attempt to drop 1 mg in Oct. It’s interesting that you knew about PMR, I had never heard of it. Good luck with your treatment, sounds like you’re on a good path.

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Hello, I am new to the PMR diagnosis and new to this group. Thank you for your support and insight provided to the members.

I have been a very active and healthy 65 year old female except for having some degenerative disc disease in my lower back, eczema flare ups and Irritable Bowel Syndrome …until, I woke up the first part of April with excruciating pain in my shoulders and upper back. A few days later my hips, thighs and eventually my knees ached horribly especially in the morning or after sitting for an extended time. i suspected PMR and had a conversation with my GP who dismissed the possibility and put me on gabapentin because i was also having nerve pain in my leg that prevented me from sleeping.

The pain in my shoulders and hips continued to get worse, so i made an appointment with a Rheumatologist who did ESR and CRP (normal) and xrays of my hips and shoulders (normal). Although my blood work was in the normal range, I was a bit persistent with trying a course of prednisone because i know that a small % of people can have normal values. In addition, i was aware of how responsive PMR is to steroid treatment. I started with 10 mg and within 24 hours i had no shoulder pain and within 36 no hip or thigh pain. This week, after 4 weeks of being on 10 mg, i will taper 1 mg a month.

My question is if that is a reasonable treatment strategy since i have no pain whatsoever. I would certainly prefer not to be on a steroid any longer than i have to be. My other question, is because i was sort of persistent with obtaining the PMR diagnosis, could it be something else that i am missing? All autoimmune markers were normal too (no rheumatoid arthritis, lupus, etc. etc.) All other blood work is normal.

Thank you for your time and assistance.

REPLY
@irishdancer

Hello, I am new to the PMR diagnosis and new to this group. Thank you for your support and insight provided to the members.

I have been a very active and healthy 65 year old female except for having some degenerative disc disease in my lower back, eczema flare ups and Irritable Bowel Syndrome …until, I woke up the first part of April with excruciating pain in my shoulders and upper back. A few days later my hips, thighs and eventually my knees ached horribly especially in the morning or after sitting for an extended time. i suspected PMR and had a conversation with my GP who dismissed the possibility and put me on gabapentin because i was also having nerve pain in my leg that prevented me from sleeping.

The pain in my shoulders and hips continued to get worse, so i made an appointment with a Rheumatologist who did ESR and CRP (normal) and xrays of my hips and shoulders (normal). Although my blood work was in the normal range, I was a bit persistent with trying a course of prednisone because i know that a small % of people can have normal values. In addition, i was aware of how responsive PMR is to steroid treatment. I started with 10 mg and within 24 hours i had no shoulder pain and within 36 no hip or thigh pain. This week, after 4 weeks of being on 10 mg, i will taper 1 mg a month.

My question is if that is a reasonable treatment strategy since i have no pain whatsoever. I would certainly prefer not to be on a steroid any longer than i have to be. My other question, is because i was sort of persistent with obtaining the PMR diagnosis, could it be something else that i am missing? All autoimmune markers were normal too (no rheumatoid arthritis, lupus, etc. etc.) All other blood work is normal.

Thank you for your time and assistance.

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Hello @irishdancer, I would like to add my welcome to Connect along with @karinaph. You will notice that we merged your post with an existing discussion on the same topic. If you click the VIEW & REPLY button at the bottom of the email notification it will take you to the discussion where you can meet other members with similar symptoms and questions and learn what they have shared.

Here's an excerpt from the article below that gives some insight on why PMR can mimic other conditions and be hard to diagnose.
"Feb 28, 2018 – In our medical records (data unpublished), six amongst 265 PMR patients had normal values of both ESR and CRP at diagnosis. The vast majority of these patients had no constitutional manifestations. The reasons why this can be possible in an auto-inflammatory disease are only speculative." — 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/

I think your treatment strategy is reasonable and I would probably discuss a taper schedule with your doctor or rheumatologist. I've tried various tapering off schedules during my 2 occurrences of PMR, usually changing dosage on a weekly basis. The first time took me 3-1/2 years to taper off with the last 6 months going between 1/2 mg and 1 mg until I was finally able to stop taking it with no or relatively no pain.

Do you keep a log of your dosage and a pain scale for the day? I found that to be helpful for both of my occurrences of PMR.

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@johnbishop

Hello @irishdancer, I would like to add my welcome to Connect along with @karinaph. You will notice that we merged your post with an existing discussion on the same topic. If you click the VIEW & REPLY button at the bottom of the email notification it will take you to the discussion where you can meet other members with similar symptoms and questions and learn what they have shared.

Here's an excerpt from the article below that gives some insight on why PMR can mimic other conditions and be hard to diagnose.
"Feb 28, 2018 – In our medical records (data unpublished), six amongst 265 PMR patients had normal values of both ESR and CRP at diagnosis. The vast majority of these patients had no constitutional manifestations. The reasons why this can be possible in an auto-inflammatory disease are only speculative." — 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/

I think your treatment strategy is reasonable and I would probably discuss a taper schedule with your doctor or rheumatologist. I've tried various tapering off schedules during my 2 occurrences of PMR, usually changing dosage on a weekly basis. The first time took me 3-1/2 years to taper off with the last 6 months going between 1/2 mg and 1 mg until I was finally able to stop taking it with no or relatively no pain.

Do you keep a log of your dosage and a pain scale for the day? I found that to be helpful for both of my occurrences of PMR.

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Thank you for your support and assistance. I will keep a log of dosage and pain scale. I have not done that yet, as I am just starting to taper this week from 10 mg. to 9 mg. and for the last month have not experienced any pain or discomfort.

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My diagnosis was just earlier this year, so my data is limited. I do feel that my diagnosis was a let’s give prednisone and see if it works, since my blood work did not specifically support PMR . And yes, I did respond. With that said, it had been 6 months and any attempt to taper is met by increased symptoms, so I’m back to 15 mg, will try going down next month. I have tried to limit or eliminate gluten, lower sugar intake but I’ve always eaten healthy fresh foods. I do wonder if this is a set of symptoms to a malady that has yet to be clearly identified. Welcome to our immune system, quite complex right?!

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My blood work confirmed the pmr diagnosis 9 months ago. I’m doing ok on 2 mg prednisone daily after initial taper down. Having bowel problems alternating from diarrhea to normal but lately waking up with pains like labor contractions. Any thoughts on this?

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