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.

Thanks. Have you read anything the other way around. (GCA then developing PMR afterwards)?

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@jixster

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

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@jixster @charlotte61 here is a reference to that 20%

: Giant cell arteritis: reviewing the advancing diagnostics and
management Eye; https://doi.org/10.1038/s41433-023-02433-y

CLINICAL PRESENTATION
GCA has heterogeneous clinical features due to the overlapping spectrum of the known clinical phenotypes: cranial GCA (C-GCA), large vessel GCA (LV-GCA), and polymyalgia rheumatica (PMR) (Fig. 2) [42]. The majority of people with cranial GCA will have symptoms of new onset headache, jaw claudication and cutaneous allodynia [8, 43, 44]. Nearly half of people with GCA have symptoms of PMR (Fig. 2) while up to one-fifth of people with PMR will be diagnosed with GCA [5, 42].

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@nyxygirl

@jixster @charlotte61 here is a reference to that 20%

: Giant cell arteritis: reviewing the advancing diagnostics and
management Eye; https://doi.org/10.1038/s41433-023-02433-y

CLINICAL PRESENTATION
GCA has heterogeneous clinical features due to the overlapping spectrum of the known clinical phenotypes: cranial GCA (C-GCA), large vessel GCA (LV-GCA), and polymyalgia rheumatica (PMR) (Fig. 2) [42]. The majority of people with cranial GCA will have symptoms of new onset headache, jaw claudication and cutaneous allodynia [8, 43, 44]. Nearly half of people with GCA have symptoms of PMR (Fig. 2) while up to one-fifth of people with PMR will be diagnosed with GCA [5, 42].

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Thanks

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Hello all and @johnbishop for those with questions about PMR AND GCA . i found a very new manuscript proposing this "emerging opinion" : Giant cell arteritis (GCA) and polymyalgia rheumatica (PMR) are closely related conditions characterized by systemic inflammation, a predominant IL-6 signature, an excellent response to glucocorticoids, a tendency to a chronic and relapsing course, and older age of the affected population. This Review highlights the emerging view that these diseases should be approached as linked conditions, unified under the term GCA–PMR spectrum disease (GPSD).

Nature Reviews Rheumatology | Volume 19 | July 2023 | 446–459
450
note the statement about "loss of interest from specialists! " sigh :
Subclassification of PMR. As mentioned earlier, PMR can be a mani- festation of GCA but it might also present clinically as an isolated entity that can either remain as such or progress to overt GCA77. For many years, PMR was dubbed ‘little GCA’, and this underestimation of its importance led to a loss of interest from specialists and the relegation of PMR to non-specialist care. In actuality, the polymyalgic syndrome of proximal pain and stiffness is often complex, with many mimics and different grades of severity that deserve specialist care99. These clues, essentially the presence of persistent systemic inflammation, have been mentioned earlier.

@charlotte61 when were you diagnosed with PMR ? May i ask if your PCP or Rheumatologist asked if you have had headaches , pain when chewing etc ? When my doctors asked this - i knew from my reading that they were "checking for signs of GCA" . Here in Boston there is a fast track clinic for GCA- Perhaps just your overall awareness might be enough to allay your concerns ? And knowing that you should go to emergency room perhaps if you experience those symptoms? i guess what i am saying is that is my approach : )

i'll mention this to illustrate the progress in this field _ My cousin had PMR about 12 years ago - he never was warned about GCA -still has never heard of it ! My former boss had GCA about ten years ago ! She had never heard of PMR until i mentioned to her my Dx of PMR !! When we mention my PMR Dx to the optometrist - he knows about GCA !

i just rediscovered the Clinical medicine review attached below.

Shared files

s41584-023-00976-8 (s41584-023-00976-8-1.pdf)

Clinical Medicine 2013, Vol 13, No 4- 398-400 self limiting ref (Clinical-Medicine-2013-Vol-13-No-4-398–400-self-limiting-ref.pdf)

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@nyxygirl

Hello all and @johnbishop for those with questions about PMR AND GCA . i found a very new manuscript proposing this "emerging opinion" : Giant cell arteritis (GCA) and polymyalgia rheumatica (PMR) are closely related conditions characterized by systemic inflammation, a predominant IL-6 signature, an excellent response to glucocorticoids, a tendency to a chronic and relapsing course, and older age of the affected population. This Review highlights the emerging view that these diseases should be approached as linked conditions, unified under the term GCA–PMR spectrum disease (GPSD).

Nature Reviews Rheumatology | Volume 19 | July 2023 | 446–459
450
note the statement about "loss of interest from specialists! " sigh :
Subclassification of PMR. As mentioned earlier, PMR can be a mani- festation of GCA but it might also present clinically as an isolated entity that can either remain as such or progress to overt GCA77. For many years, PMR was dubbed ‘little GCA’, and this underestimation of its importance led to a loss of interest from specialists and the relegation of PMR to non-specialist care. In actuality, the polymyalgic syndrome of proximal pain and stiffness is often complex, with many mimics and different grades of severity that deserve specialist care99. These clues, essentially the presence of persistent systemic inflammation, have been mentioned earlier.

@charlotte61 when were you diagnosed with PMR ? May i ask if your PCP or Rheumatologist asked if you have had headaches , pain when chewing etc ? When my doctors asked this - i knew from my reading that they were "checking for signs of GCA" . Here in Boston there is a fast track clinic for GCA- Perhaps just your overall awareness might be enough to allay your concerns ? And knowing that you should go to emergency room perhaps if you experience those symptoms? i guess what i am saying is that is my approach : )

i'll mention this to illustrate the progress in this field _ My cousin had PMR about 12 years ago - he never was warned about GCA -still has never heard of it ! My former boss had GCA about ten years ago ! She had never heard of PMR until i mentioned to her my Dx of PMR !! When we mention my PMR Dx to the optometrist - he knows about GCA !

i just rediscovered the Clinical medicine review attached below.

Jump to this post

Great information, thanks @nyxygirl!

REPLY
@nyxygirl

Hello all and @johnbishop for those with questions about PMR AND GCA . i found a very new manuscript proposing this "emerging opinion" : Giant cell arteritis (GCA) and polymyalgia rheumatica (PMR) are closely related conditions characterized by systemic inflammation, a predominant IL-6 signature, an excellent response to glucocorticoids, a tendency to a chronic and relapsing course, and older age of the affected population. This Review highlights the emerging view that these diseases should be approached as linked conditions, unified under the term GCA–PMR spectrum disease (GPSD).

Nature Reviews Rheumatology | Volume 19 | July 2023 | 446–459
450
note the statement about "loss of interest from specialists! " sigh :
Subclassification of PMR. As mentioned earlier, PMR can be a mani- festation of GCA but it might also present clinically as an isolated entity that can either remain as such or progress to overt GCA77. For many years, PMR was dubbed ‘little GCA’, and this underestimation of its importance led to a loss of interest from specialists and the relegation of PMR to non-specialist care. In actuality, the polymyalgic syndrome of proximal pain and stiffness is often complex, with many mimics and different grades of severity that deserve specialist care99. These clues, essentially the presence of persistent systemic inflammation, have been mentioned earlier.

@charlotte61 when were you diagnosed with PMR ? May i ask if your PCP or Rheumatologist asked if you have had headaches , pain when chewing etc ? When my doctors asked this - i knew from my reading that they were "checking for signs of GCA" . Here in Boston there is a fast track clinic for GCA- Perhaps just your overall awareness might be enough to allay your concerns ? And knowing that you should go to emergency room perhaps if you experience those symptoms? i guess what i am saying is that is my approach : )

i'll mention this to illustrate the progress in this field _ My cousin had PMR about 12 years ago - he never was warned about GCA -still has never heard of it ! My former boss had GCA about ten years ago ! She had never heard of PMR until i mentioned to her my Dx of PMR !! When we mention my PMR Dx to the optometrist - he knows about GCA !

i just rediscovered the Clinical medicine review attached below.

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Thanks for the info, nyxygirl. Yes, my doctor did ask me if I had any headaches or jaw pain when I was first diagnosed with PMR, so he is aware of the connection between PMR and GCA. I'd never heard of either condition until I was diagnosed, and am keeping my fingers crossed that I don't end up developing GCA along with my PMR. I have never seen a rheumatologist -- I live in a small town, so there probably isn't even one practicing in my area. Even if there was, it would likely mean months of waiting to get an appointment. I don't have a lot of confidence in our ER. After endless hours of sitting around waiting, it seems you either get blown off or misdiagnosed. It would be nice to have a note from the doctor about my PMR diagnosis, so that if I ever did start experiencing GCA symptoms, I could show the ER staff the note so they would take me seriously and fast track me.

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After reading all of your posts, and so many others on this forum, I have started to wonder if I had GCA last year, and didn't realize it. Around August of 2022, I started getting "tension headaches" in the back of my head that lasted on and off for a couple of weeks or more. Tension headaches have never been unusual for me, so I put them down to doing too much computer work, especially as the headaches would ease off if I lay down and relaxed. The headaches never bothered me at night, and I never woke up with them-- they tended to come on during the day, especially if I was spending a lot of time at the computer. Around the same time, I noticed the vision in my left eye got a bit blurrier, but I put that down to an advancing cataract. I have since had eye exams, and the cataract was removed two months ago, but no one made any mention of possible GCA. The headaches haven't come back and I never thought another thing about them until being diagnosed with PMR this past summer (almost exactly a year later) -- and especially after just reading some posts by other forum members that GCA headaches can be similar to occipital tension headaches. I intend to mention this to my doctor next time I see him. I just didn't connect the two incidents until very recently but I can't help wondering now if they are related.

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I have just gone from 6mg to 5 mg Prednisone and am feeling nervous about my progress. I am experiencing mild jaw discomfort so am carefully monitoring . I don't want to become a hypochondriac about my GCA.
So far my journey has been 14 months since severe claudication and double vision put me in hospital. Recently my rheumatologist put me on Actemra so I am hopeful for continuing improvement.

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About 12 months after being diagnosed with PMR and about 2 months after tapering off prednisone, I started experiencing temporal headaches and jaw pain. After a temporal biopsy, I was then diagnosed with GCA.

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@minijohn

About 12 months after being diagnosed with PMR and about 2 months after tapering off prednisone, I started experiencing temporal headaches and jaw pain. After a temporal biopsy, I was then diagnosed with GCA.

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My experience sounds similar. After 2 years of PMR down to 3 ml of prednisone, I started having jaw pain and was diagnosed with GCA. Now on 40 ml of prednisone, feeling good but concerned.

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