PMR connection to GCA

Posted by norieaugustine @norieaugustine, Sep 24, 2021

I am okay with some pain when I lower my dosage of Prednisone, rather than no pain with the higher dose. But does this mean more risk of developing GCA? PMR is bad enough but GCA sounds much worse.

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

Hello @norieaugustine, Welcome to Connect. I have PMR which is currently in remission but when it was active my primary care doctor along with my rheumatologist would frequently ask me if I had any pain in my scalp or temple areas which can be an indication of giant cell arteritis (GCA). I also lived with some pain as I was tapering off of prednisone for both occurrences I had with PMR. My rheumatologist had me keep a daily pain log along with the prednisone dosage I was taking for that day which was helpful when I was tapering off of prednisone. Here's some information on GCA that might explain it a little better.

Giant Cell Arteritis – Fast Facts: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Giant-Cell-Arteritis

You also may want to read through the posts in these discussion to see what other members have shared:
— PMR initial diagnosis: Can there be an underlying disease?: https://connect.mayoclinic.org/discussion/pmr-initial-diagnosis-1/
— GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica): https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/

Can you share a little more about your PMR diagnosis and how long you have been on prednisone?

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@johnbishop

Hello @norieaugustine, Welcome to Connect. I have PMR which is currently in remission but when it was active my primary care doctor along with my rheumatologist would frequently ask me if I had any pain in my scalp or temple areas which can be an indication of giant cell arteritis (GCA). I also lived with some pain as I was tapering off of prednisone for both occurrences I had with PMR. My rheumatologist had me keep a daily pain log along with the prednisone dosage I was taking for that day which was helpful when I was tapering off of prednisone. Here's some information on GCA that might explain it a little better.

Giant Cell Arteritis – Fast Facts: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Giant-Cell-Arteritis

You also may want to read through the posts in these discussion to see what other members have shared:
— PMR initial diagnosis: Can there be an underlying disease?: https://connect.mayoclinic.org/discussion/pmr-initial-diagnosis-1/
— GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica): https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/

Can you share a little more about your PMR diagnosis and how long you have been on prednisone?

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I've had PMR for almost one year and am now trying to get below 7.5 mg Prednisone, but have not been very successful. I have read quite a lot about GCA and just wonder if there are things those of us with PMR do that make it more or less likely we will get GCA. I will read the posts you mentioned also. Thanks for your welcoming message and the information.

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@norieaugustine

I've had PMR for almost one year and am now trying to get below 7.5 mg Prednisone, but have not been very successful. I have read quite a lot about GCA and just wonder if there are things those of us with PMR do that make it more or less likely we will get GCA. I will read the posts you mentioned also. Thanks for your welcoming message and the information.

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I should have mentioned these discussions also as they might be helpful for tapering off of prednisone.

— PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
— Prednisone tapering is hard: Do complementary therapies help?: https://connect.mayoclinic.org/discussion/prednisone-tapering/
— Tapering off of Prednisone: https://connect.mayoclinic.org/discussion/prednisone/

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@norieaugustine

I've had PMR for almost one year and am now trying to get below 7.5 mg Prednisone, but have not been very successful. I have read quite a lot about GCA and just wonder if there are things those of us with PMR do that make it more or less likely we will get GCA. I will read the posts you mentioned also. Thanks for your welcoming message and the information.

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Hi @norieaugustine, PMR and GCA are "companion systemic inflammatory disorders". In the U.S., the annual incidence of PMR is 52.5 per 100,000 in patients aged 50 and older. The incidence and prevalence of GCA are approximately one-third those of PMR (Cecil and Goldman's Textbook of Medicine). I found an article online, "Treatment of Polymyalgia Rheumatica" in Up to Date which stated that, "The initial dose of prednisone needed to alleviate musculoskeletal symptoms in PMR is lower than used to control vascular inflammation associated with GCA. Treatment has not been shown to improve prognosis or prevent progression to GCA." So whether PMR advances to GCA seems to be out of our control. I have both. The pain and stiffness of PMR were terrible and affected my whole body from the neck down. With GCA, I had a couple of disruptions to vision in my right eye, occasional short stabbing or pulsating pains from my right ear to my eye which increased over time, a tender scalp, and the worst stiff neck ever, with pain on both sides of the back of my head. I went undiagnosed for a year, largely my own fault, because I thought I had fibromyalgia. A mild case of herpes zoster, even after having the Shingrex vaccine a year prior, and anemia brought it all to light through a consult with an infectious disease specialist. My rheumatologist put me on a low dose of prednisone, about 10 mg, then increased it to 40 mg after hearing my symptoms and ordering a temporal artery biopsy which was positive for GCA. My mother-in-law had temporal arteritis, diagnosed in her 80s and she lived to be nearly 100. My maternal aunt also had it. I am managing very well now, down to 7.5 mg of prednisone. One thing for anyone with GCA, my Rheumy told me to take a low dose of aspirin every day as those with GCA may develop aortic aneurysms down the road. I'm thankful these disorders can be managed with prednisone and so far the tapering has been going well. Now I just have to take care of my bones! My suggestion is to try not to worry about getting GCA too much, as it's out of your control, but watch for the signs and report them to your doctor immediately if you get them because the consequences of untreated GCA are stroke or blindness. Best to you.

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@tsc

Hi @norieaugustine, PMR and GCA are "companion systemic inflammatory disorders". In the U.S., the annual incidence of PMR is 52.5 per 100,000 in patients aged 50 and older. The incidence and prevalence of GCA are approximately one-third those of PMR (Cecil and Goldman's Textbook of Medicine). I found an article online, "Treatment of Polymyalgia Rheumatica" in Up to Date which stated that, "The initial dose of prednisone needed to alleviate musculoskeletal symptoms in PMR is lower than used to control vascular inflammation associated with GCA. Treatment has not been shown to improve prognosis or prevent progression to GCA." So whether PMR advances to GCA seems to be out of our control. I have both. The pain and stiffness of PMR were terrible and affected my whole body from the neck down. With GCA, I had a couple of disruptions to vision in my right eye, occasional short stabbing or pulsating pains from my right ear to my eye which increased over time, a tender scalp, and the worst stiff neck ever, with pain on both sides of the back of my head. I went undiagnosed for a year, largely my own fault, because I thought I had fibromyalgia. A mild case of herpes zoster, even after having the Shingrex vaccine a year prior, and anemia brought it all to light through a consult with an infectious disease specialist. My rheumatologist put me on a low dose of prednisone, about 10 mg, then increased it to 40 mg after hearing my symptoms and ordering a temporal artery biopsy which was positive for GCA. My mother-in-law had temporal arteritis, diagnosed in her 80s and she lived to be nearly 100. My maternal aunt also had it. I am managing very well now, down to 7.5 mg of prednisone. One thing for anyone with GCA, my Rheumy told me to take a low dose of aspirin every day as those with GCA may develop aortic aneurysms down the road. I'm thankful these disorders can be managed with prednisone and so far the tapering has been going well. Now I just have to take care of my bones! My suggestion is to try not to worry about getting GCA too much, as it's out of your control, but watch for the signs and report them to your doctor immediately if you get them because the consequences of untreated GCA are stroke or blindness. Best to you.

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I have always worried about GCA while decreasing prednisone. Thank you for this information. It is one of the best explanations I have seen. Like so many things, it sounds as though getting it is not in our control, but dealing with it is.

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@virginiaj

I have always worried about GCA while decreasing prednisone. Thank you for this information. It is one of the best explanations I have seen. Like so many things, it sounds as though getting it is not in our control, but dealing with it is.

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Hi @virginiaj. There are also genetic markers for PMR and GCA, which I haven't seen mentioned very often. These disorders are more common in women and Caucasians, of European ancestry, particularly Northern European. I think you're right – getting the disorder is not in our control. I'm thankful that, for the most part, we have an effective drug to manage symptoms.

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Hi Jean Anne @jabrown0407, Thank you for the private message. I thought I would respond to your message in this discussion – PMR connection to GCA so that other members who may have information or similar experiences can share them with you. In answer to your question, I don't remember running across any NIH or other article on headaches associated with PMR when you have not also been diagnosed with GCA. Here are a few articles I did find on PMR and GCA that mention headaches and diagnosing PMR and GCA.

— All headaches are not GCA : https://academic.oup.com/rheumap/article/3/Supplement_1/rkz028.005/5572736
— Diagnostic accuracy of vascular ultrasound in patients with suspected giant cell arteritis (EUREKA): a prospective, multicentre, non-interventional, cohort study: https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(21)00246-0/fulltext
— Widespread headache as the first clinical manifestation of giant cell arteritis in patients affected by polymyalgia rheumatica: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5149570/

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Thank you, John, so much for the links on GCA and headaches. I hope they will help me sort some things out.

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@jabrown0407

Thank you, John, so much for the links on GCA and headaches. I hope they will help me sort some things out.

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Hi @jabrown0407, I had PMR, undiagnosed, a number of months before being diagnosed with GCA. With PMR, I had pain and stiffness (a 10 on a scale of 1-10) from the neck down. After about 9 months, that gave way to an incredibly stiff neck, with pain as if lines were drawn on either side of my head from the neck up to the ears. Also, short stabbing pains from the ear to the nose, they were fleeting, but they increased in number. A few days before my temporal artery biopsy I counted 25 pains. I had scalp tenderness that lasted a couple of weeks, then disappeared, difficulty seeing out of my right eye a couple of times (everything was white) and a dry cough every night, The eye problems are nothing to mess with. Since having them, I've been advised to get to an emergency room immediately if they ever recur. I wish you the best

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@tsc, @jabrown0407 . Great advice, Teri, to get right to Emergency if eye issues present! I permanently lost most of the vision in my right eye when GCA was 'suspected' in March 2019 but not treated until emergency hospital admission in June 2019, when that vision loss suddenly happened at home one morning.

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@artist01

@tsc, @jabrown0407 . Great advice, Teri, to get right to Emergency if eye issues present! I permanently lost most of the vision in my right eye when GCA was 'suspected' in March 2019 but not treated until emergency hospital admission in June 2019, when that vision loss suddenly happened at home one morning.

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I was fortunate @artist01 in that the loss of vision was short and only happened twice. If it happened again, I would have gotten an appointment with the optometrist, but I never would have thought to go to the Emergency Room. When GCA was suspected, were you prescribed prednisone?

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