1. < Polymyalgia Rheumatica (PMR)

How often does PMR progress to GCA?

Posted by charlotte61 @charlotte61, Nov 11, 2023

I'm just wondering how many forum members here had their PMR progress to GCA? I did some research on the latter yesterday evening (perhaps unwisely) and scared myself half to death when I read about the risks of stroke, blindness, aneurysm, etc., associated with GCA. I also learned that the relatively low doses of prednisone we take for PMR won't do anything to prevent the development of GCA -- which was another shock. It seems the percentage of people with PMR who go on to develop GCA varies quite widely in the literature, so I wanted to know what your own experiences have been. I would like to do everything and anything I can to prevent GCA, but it looks like there's not really any way to prevent it -- it just happens in some people, sometimes without warning. How many of you experienced visual problems with your GCA? I have to say that blindness is one of my biggest fears, so reading about people who wake up one morning unable to see out of one or both eyes terrified me. To be frank, I'd rather be dead than blind. Just interested in hearing from those who are actually going through these diseases what your experiences have been with GCA and visual disturbances. Thanks! 🙂

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

pag1949 | @pag1949 | Nov 18, 2023
In reply to @johnbishop "Hi @pag1949, You will notice that we merged your discussion into an existing discussion on the..." + (show)
@johnbishop

Hi @pag1949, You will notice that we merged your discussion into an existing discussion on the same topic. If you click the link below it will take you to the beginning of the discussion where you can read what others have shared:
--- How often does PMR progress to GCA?: https://connect.mayoclinic.org/discussion/how-often-does-pmr-progress-to-gca/

I also found the following research that you might find interesting.
--- Disease stratification in GCA and PMR: state of the art and future perspectives: https://www.nature.com/articles/s41584-023-00976-8

How are you doing with your GCA symptoms and treatment?

Jump to this post

Ok. I am on 40 mg prednisone a day which I take after breakfast. I have been having sleepy time tea an hour before bedtime to see if it will help me sleep. I have been going to bed at 9:30 or so and I seem to fall asleep within 30 minutes or so and I wake up at 2 or 3 thinking “I must have slept 8 hours” but unfortunately it was only 5 or 6 with a couple of trips to the bathroom in between. So that is my biggest problem. The prednisone seems to make me a bit jittery at times. You might remember that I couldn’t get into see a Rheumatologist (actually he is a PA) until mid April which concerned me because I am anxious to begin a plan of care with someone who knows more about GCA than my primary care doctor
does. They called yesterday and had a cancellation so now I have an appointment in mid January. So, it is better. (The other Rheumatologists in the area have a 4-6 month wait too.) Thanks for asking. I am really enjoying this group and the information it’s members provide.

REPLY
rashida | @rashida | Nov 19, 2023
In reply to @pag1949 "Has anyone seen any research in how often GCA progresses to PMR?Just diagnosed with GCA and..." + (show)
@pag1949

<p>Has anyone seen any research in how often GCA progresses to PMR?</p><p>Just diagnosed with GCA and wondering how often it progresses to PMR.</p>

Jump to this post

@pag1949 If you have been diagnosed with GCA you must have had PMR (Polymyalgia Rheumatica) already. As far as I know, PMR is the precursor to GCA.

REPLY
1 reply
amu66 | @amu66 | Nov 19, 2023

I was diagnosed with PMR in October 2018. Started on 25 mg Prednisolone. Stopped taking the medication in December 2020. In October 2021, I had a 3-week period with the worst headaches I could ever imagine. Nothing helped the pain. Naturally, I was afraid that I had GCA and went all of 4 times to the Emergency where, each time, I was told that I did not have it (I had none of the usual symptoms). I was diagnosed in the end with tension headache (and normally I do not get headaches). The bad headaches stopped in November.
Between Christmas 2021 and New Year 2022, I began to feel unwell (fever, tiredness) and was examined with ultrasound by a rheumatologist. Again, I was told that I did not have GCA. Nevertheless, the rheumatologist advised me to go to the Emergency again because my temperature had risen. There, they found that I had pneumonia and a UTI and I was admitted to hospital. After about a week, one of the doctors on duty, having read my journal, said he would like to bring in the rheumatologists again and I was taken to their department for another ultrasound exam. This time, GCA was detected. Because I had none of the usual symptoms, I was put on 15 mg Prednisolone. It made me feel better but my CRP began to rise so they upped the dose to 37.5. This was in February 2022.
Unfortunately, over the next year, my CRP continued to be too high (though it fluctuated). About a month ago I had a PET scan to see what was going on. It turns out that I still have GCA but mainly in my heart area and that I have developed a b-dissection (a small tear on my aorta). Seemingly this was also seen on a scan in December 2021 but no one ever mentioned it to me. At the time I was asked to see a cardiologist, which I did, and he found that all was well with my heart. The results of the latest PET scan were sent to the vascular specialists who did not think there was any danger since the tear has not changed in the two years that have passed since the it was first seen.
So, it seems that GCA is not just something that gives head symptoms but something that can be causing harm elsewhere in the body without symptoms other that raised CRP. I am now taking 40 mg Prednisolone and feeling really good. I shall be seeing another rheumatologist next week who intends to put me on a steriod-sparing drug (Roacterma) to reduce the amount of Prednisolone.

REPLY
2 replies
pag1949 | @pag1949 | Nov 19, 2023
In reply to @amu66 "I was diagnosed with PMR in October 2018. Started on 25 mg Prednisolone. Stopped taking the..." + (show)
@amu66

I was diagnosed with PMR in October 2018. Started on 25 mg Prednisolone. Stopped taking the medication in December 2020. In October 2021, I had a 3-week period with the worst headaches I could ever imagine. Nothing helped the pain. Naturally, I was afraid that I had GCA and went all of 4 times to the Emergency where, each time, I was told that I did not have it (I had none of the usual symptoms). I was diagnosed in the end with tension headache (and normally I do not get headaches). The bad headaches stopped in November.
Between Christmas 2021 and New Year 2022, I began to feel unwell (fever, tiredness) and was examined with ultrasound by a rheumatologist. Again, I was told that I did not have GCA. Nevertheless, the rheumatologist advised me to go to the Emergency again because my temperature had risen. There, they found that I had pneumonia and a UTI and I was admitted to hospital. After about a week, one of the doctors on duty, having read my journal, said he would like to bring in the rheumatologists again and I was taken to their department for another ultrasound exam. This time, GCA was detected. Because I had none of the usual symptoms, I was put on 15 mg Prednisolone. It made me feel better but my CRP began to rise so they upped the dose to 37.5. This was in February 2022.
Unfortunately, over the next year, my CRP continued to be too high (though it fluctuated). About a month ago I had a PET scan to see what was going on. It turns out that I still have GCA but mainly in my heart area and that I have developed a b-dissection (a small tear on my aorta). Seemingly this was also seen on a scan in December 2021 but no one ever mentioned it to me. At the time I was asked to see a cardiologist, which I did, and he found that all was well with my heart. The results of the latest PET scan were sent to the vascular specialists who did not think there was any danger since the tear has not changed in the two years that have passed since the it was first seen.
So, it seems that GCA is not just something that gives head symptoms but something that can be causing harm elsewhere in the body without symptoms other that raised CRP. I am now taking 40 mg Prednisolone and feeling really good. I shall be seeing another rheumatologist next week who intends to put me on a steriod-sparing drug (Roacterma) to reduce the amount of Prednisolone.

Jump to this post

So sorry for your experience. From what I have read it appears that GCA is so often misdiagnosed/undiagnosed
for a long time in many people. For that, I feel lucky that I was diagnosed within a month with my only symptom being minor headaches in the evenings and overnight for a month. My allergist had the wisdom to send me for a blood test and the SED rate and CRP were both high. That started me on the quick road to the ultrasound and biopsy and ultimately the diagnosis. Glad you are feeling better. Good luck with the rest of your treatment.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 19, 2023
In reply to @amu66 "I was diagnosed with PMR in October 2018. Started on 25 mg Prednisolone. Stopped taking the..." + (show)
@amu66

I was diagnosed with PMR in October 2018. Started on 25 mg Prednisolone. Stopped taking the medication in December 2020. In October 2021, I had a 3-week period with the worst headaches I could ever imagine. Nothing helped the pain. Naturally, I was afraid that I had GCA and went all of 4 times to the Emergency where, each time, I was told that I did not have it (I had none of the usual symptoms). I was diagnosed in the end with tension headache (and normally I do not get headaches). The bad headaches stopped in November.
Between Christmas 2021 and New Year 2022, I began to feel unwell (fever, tiredness) and was examined with ultrasound by a rheumatologist. Again, I was told that I did not have GCA. Nevertheless, the rheumatologist advised me to go to the Emergency again because my temperature had risen. There, they found that I had pneumonia and a UTI and I was admitted to hospital. After about a week, one of the doctors on duty, having read my journal, said he would like to bring in the rheumatologists again and I was taken to their department for another ultrasound exam. This time, GCA was detected. Because I had none of the usual symptoms, I was put on 15 mg Prednisolone. It made me feel better but my CRP began to rise so they upped the dose to 37.5. This was in February 2022.
Unfortunately, over the next year, my CRP continued to be too high (though it fluctuated). About a month ago I had a PET scan to see what was going on. It turns out that I still have GCA but mainly in my heart area and that I have developed a b-dissection (a small tear on my aorta). Seemingly this was also seen on a scan in December 2021 but no one ever mentioned it to me. At the time I was asked to see a cardiologist, which I did, and he found that all was well with my heart. The results of the latest PET scan were sent to the vascular specialists who did not think there was any danger since the tear has not changed in the two years that have passed since the it was first seen.
So, it seems that GCA is not just something that gives head symptoms but something that can be causing harm elsewhere in the body without symptoms other that raised CRP. I am now taking 40 mg Prednisolone and feeling really good. I shall be seeing another rheumatologist next week who intends to put me on a steriod-sparing drug (Roacterma) to reduce the amount of Prednisolone.

Jump to this post

Hello @amu66, I would like to add my welcome to Connect along with @pag1949 and others. I'm glad to hear that you finally are on track for treating GCA. I'm wondering how many others are out there with similar stories. I did find some related articles that might shed some light on the topic.

"Giant cell arteritis (GCA) is a relatively infrequent disorder that is underdiagnosed and little appraised in the field of general cardiology."
--- (2009) - Giant cell arteritis as a cardiovascular entity: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2743816/

"As an inflammatory vascular disease, GCA can be directly and indirectly responsible for cardiovascular (CV) events."
--- (2022) - An Updated Review of Cardiovascular Events in Giant Cell Arteritis: https://www.mdpi.com/2077-0383/11/4/1005

You might also be interested in this related discussion:
--- What's your experience with Actemra for GCA?: https://connect.mayoclinic.org/discussion/gca-1/

REPLY
2 replies
pag1949 | @pag1949 | Nov 19, 2023
In reply to @johnbishop "Hello @amu66, I would like to add my welcome to Connect along with @pag1949 and others...." + (show)
@johnbishop

Hello @amu66, I would like to add my welcome to Connect along with @pag1949 and others. I'm glad to hear that you finally are on track for treating GCA. I'm wondering how many others are out there with similar stories. I did find some related articles that might shed some light on the topic.

"Giant cell arteritis (GCA) is a relatively infrequent disorder that is underdiagnosed and little appraised in the field of general cardiology."
--- (2009) - Giant cell arteritis as a cardiovascular entity: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2743816/

"As an inflammatory vascular disease, GCA can be directly and indirectly responsible for cardiovascular (CV) events."
--- (2022) - An Updated Review of Cardiovascular Events in Giant Cell Arteritis: https://www.mdpi.com/2077-0383/11/4/1005

You might also be interested in this related discussion:
--- What's your experience with Actemra for GCA?: https://connect.mayoclinic.org/discussion/gca-1/

Jump to this post

Z thank you for the articles

REPLY
amu66 | @amu66 | Nov 19, 2023
In reply to @pag1949 "So sorry for your experience. From what I have read it appears that GCA is so..." + (show)
@pag1949

So sorry for your experience. From what I have read it appears that GCA is so often misdiagnosed/undiagnosed
for a long time in many people. For that, I feel lucky that I was diagnosed within a month with my only symptom being minor headaches in the evenings and overnight for a month. My allergist had the wisdom to send me for a blood test and the SED rate and CRP were both high. That started me on the quick road to the ultrasound and biopsy and ultimately the diagnosis. Glad you are feeling better. Good luck with the rest of your treatment.

Jump to this post

So glad to hear you were quickly diagnosed, pag1949. It is so important. I wish you well on the rest of your journey. And thank you for your kind words.

REPLY
amu66 | @amu66 | Nov 19, 2023
In reply to @johnbishop "Hello @amu66, I would like to add my welcome to Connect along with @pag1949 and others...." + (show)
@johnbishop

Hello @amu66, I would like to add my welcome to Connect along with @pag1949 and others. I'm glad to hear that you finally are on track for treating GCA. I'm wondering how many others are out there with similar stories. I did find some related articles that might shed some light on the topic.

"Giant cell arteritis (GCA) is a relatively infrequent disorder that is underdiagnosed and little appraised in the field of general cardiology."
--- (2009) - Giant cell arteritis as a cardiovascular entity: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2743816/

"As an inflammatory vascular disease, GCA can be directly and indirectly responsible for cardiovascular (CV) events."
--- (2022) - An Updated Review of Cardiovascular Events in Giant Cell Arteritis: https://www.mdpi.com/2077-0383/11/4/1005

You might also be interested in this related discussion:
--- What's your experience with Actemra for GCA?: https://connect.mayoclinic.org/discussion/gca-1/

Jump to this post

Many thanks, John, for your warm welcome to what looks like a very useful site.

Thank you too for the links you sent me. I haven't managed to read them yet, but very much look forward to doing so.

All the best from Denmark.

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dbyrne | @dbyrne | Nov 20, 2023
In reply to @rashida "@pag1949 If you have been diagnosed with GCA you must have had PMR (Polymyalgia Rheumatica) already...." + (show)
@rashida

@pag1949 If you have been diagnosed with GCA you must have had PMR (Polymyalgia Rheumatica) already. As far as I know, PMR is the precursor to GCA.

Jump to this post

Hello: I was diagnosed with GCA in July & did not have
PMR before diagnosis. I am currently being weaned off prednisone & am taking an Actemra injection once every 2 weeks.

REPLY
jixster | @jixster | Nov 20, 2023
In reply to @pag1949 "Has anyone seen any research in how often GCA progresses to PMR?Just diagnosed with GCA and..." + (show)
@pag1949

<p>Has anyone seen any research in how often GCA progresses to PMR?</p><p>Just diagnosed with GCA and wondering how often it progresses to PMR.</p>

Jump to this post

I have read on various sites that up to 20% of people with PMR will get GCA.

REPLY
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