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.

I’m in the process of finding out if I have GCA. Should know in a few days. On 40 mg of prednisone after being on 3 for PMR.

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Hi @charlotte61, You pose an interesting question. My guess is both conditions are related but that PMR doesn't progress to GCA. It's just my non medical opinion that there are other factors involved that determine whether or not you have or will develop GCA. Here's some related information on the topic from a 2017 article.

"Although 40% to 60% of patients with GCA have associated PMR symptoms at diagnosis,⁶ only 10% to 20% of patients with isolated PMR will develop symptoms of GCA."
--- Latest Advances in the Diagnosis and Treatment of Polymyalgia Rheumatica: https://www.medcentral.com/pain/chronic/latest-advances-diagnosis-treatment-polymyalgia-rheumatica.

I've had PMR twice and it never progressed to GCA although my doctor always had me watch for GCA symptoms.

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@susang222

I’m in the process of finding out if I have GCA. Should know in a few days. On 40 mg of prednisone after being on 3 for PMR.

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Hope it turns out that you don't have it!

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@johnbishop

Hi @charlotte61, You pose an interesting question. My guess is both conditions are related but that PMR doesn't progress to GCA. It's just my non medical opinion that there are other factors involved that determine whether or not you have or will develop GCA. Here's some related information on the topic from a 2017 article.

"Although 40% to 60% of patients with GCA have associated PMR symptoms at diagnosis,⁶ only 10% to 20% of patients with isolated PMR will develop symptoms of GCA."
--- Latest Advances in the Diagnosis and Treatment of Polymyalgia Rheumatica: https://www.medcentral.com/pain/chronic/latest-advances-diagnosis-treatment-polymyalgia-rheumatica.

I've had PMR twice and it never progressed to GCA although my doctor always had me watch for GCA symptoms.

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Thanks John -- very good article -- thanks for sharing the link. I'm glad your own PMR didn't lead to GCA. It sounds like such a scary disease.

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I had PMR for 6 weeks before I developed symptoms of GCA (temporal pain, swollen temporal arteries, and jaw pain (claudication) with chewing or opening the mouth wide, which is due to inadequate blood flow to the muscles involved. The jaw pain was the worst, could not eat solid food. It even woke me up at night. These GCA symptoms came on quite suddenly, over the course of an hour or 2. From what I have read, having jaw pain increases the chance that vision loss may occur. I never experienced any transient vision loss.
My ESR and sed rate were within the normal range when I had them done 3 days later. (I was not on prednisone, never went on it for the PMR). I was sure I had GCA but my GP wasn’t quite on board due to the labs. I insisted on going on prednisone 40 mg, had a temporal artery biopsy 3 days later which was positive. Had to increase prednisone to 60mg after 5 days due to return of jaw pain.
I sure hope you won’t ever get GCA. If you have symptoms though, especially visual or jaw pain, don’t wait, get medical help as soon as possible. I was probably lucky to not lose vision. I applaud you for educating yourself on this. Patients need to be their own advocates! All the best to you.

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@julie4868

I had PMR for 6 weeks before I developed symptoms of GCA (temporal pain, swollen temporal arteries, and jaw pain (claudication) with chewing or opening the mouth wide, which is due to inadequate blood flow to the muscles involved. The jaw pain was the worst, could not eat solid food. It even woke me up at night. These GCA symptoms came on quite suddenly, over the course of an hour or 2. From what I have read, having jaw pain increases the chance that vision loss may occur. I never experienced any transient vision loss.
My ESR and sed rate were within the normal range when I had them done 3 days later. (I was not on prednisone, never went on it for the PMR). I was sure I had GCA but my GP wasn’t quite on board due to the labs. I insisted on going on prednisone 40 mg, had a temporal artery biopsy 3 days later which was positive. Had to increase prednisone to 60mg after 5 days due to return of jaw pain.
I sure hope you won’t ever get GCA. If you have symptoms though, especially visual or jaw pain, don’t wait, get medical help as soon as possible. I was probably lucky to not lose vision. I applaud you for educating yourself on this. Patients need to be their own advocates! All the best to you.

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Hello @julie4868, Welcome to Connect. Thank you for sharing your experience with GCA. You are so right about being your own advocate when it comes to your health.

How are you doing now with your GCA, is it in remission?

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I'm very sorry this happened to you, but thank goodness you didn't lose any vision. Yes, we definitely have to be our own advocates. I'd never even heard of either PMR or GCA until I did some research on what might be causing the sudden unexplained joint and muscle pain in my hips, thighs, arms, and shoulders. I started with the pain in late June 2023, and it got progressively worse through July (the whole month was a total write-off for me) until I was finally diagnosed in early August and put on 15 mg/day of prednisone, which worked very effectively to reduce my symptoms. So I've had PMR for almost five months now.

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@johnbishop

Hello @julie4868, Welcome to Connect. Thank you for sharing your experience with GCA. You are so right about being your own advocate when it comes to your health.

How are you doing now with your GCA, is it in remission?

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Hi John,
Thanks for your work with this forum. It’s a great resource for patients to connect with each other and learn from their experiences.
I am in my 4th year with GCA, on prednisone, and also Actemra since 12/22, and struggling with a relapse. I was thinking that the Actemra infusions would allow me to taper off the prednisone, got to 1.5 mg and had scalp tenderness, temporal pain and have had to go to 30 mg prednisone to relieve symptoms. So it’s pretty disappointing. This is the 3rd relapse I’ve had.
I am a retired medical lab scientist and stay educated on health issues, have read up on PMR/GCA extensively. Blogs like this one and especially Health Unlocked (I think that’s the one, in the UK) have been so helpful.
Thank you.

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