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! 🙂

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@isabelle7

Hi @charlotte61
I can't say for sure you can avoid it. But. Having been through this horrifying experience I would say you have a lot more knowledge than we did and knowledge, they say, is power. Honestly, if you were to get the symptoms of GCA my first move would be urgent care for labs to check inflammation levels. Those come back rather quickly. If there's a rise, I'd go to the ER and tell them what you suspect. Explain your symptoms, that you've had PMR and are at high risk, and that you do not want to wait to chance blindness or stroke. That seems to get attention. Just listen to your body and don't worry about it because you don't need that additional stress. You know what to do now. The worse is not knowing. And be sure you have a good doctor who will listen to you. It could be something worth discussing at your next appointment. You could share what happened to us and that you want to be assured this will not happen to you. Good chances are you won't get it. Most people with PMR don't. Stay positive, do the things you know work for you and I wish you all the best in this journey. I'll be posting updates as things progress. Next is the results of the CAT scans next week.

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It shouldn't be that way for GCA.

I was diagnosed with PMR about 15 years ago but all my doctors ask me about GCA related symptoms. I had temporal facial pain with electric shocks around my left eye (trigeminal neuralgia).
https://www.ninds.nih.gov/health-information/disorders/trigeminal-neuralgia
I went to the emergency room several times when the electricity wouldn't stop. My wife would have to go with me because I would be unable to speak.

I also would have frequent visual disturbances and some vision loss that wasn't permanent. My rheumatologist offers me a semi-apology for having to ask me about symptoms of GCA even now -- 15 years after being diagnosed with PMR. I just say that I understand why the questions are asked and respond by saying, "to my knowledge --I don't have GCA."

All I have to do is call my ophthalmologist and mention that uveitis might have recurred. The only question they ever ask me is "How soon can I come in to be seen?" Uveitis can cause permanent vision loss too. I'm usually seen within hours of calling to report my symptoms of uveitis.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
When my ophthalmologist does his exam for uveitis, he reassures me that he doesn't see signs of GCA. He says my optic nerve still looks healthy but the inflammation inside my eye is usually severe. Prednisone 60 mg is what I usually start with for every flare of uveitis.

Once I went to a rheumatology appointment with a red eye. My rheumatologist asked me if I knew how serious it could be. She called the ophthalmology department herself and sent me there to be seen.

Only once did I fear I would be blind in one eye in spite of 100 mg of prednisone. Now I see a "uveitis specialist" rather than a general ophthalmologist.

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@dadcue

It shouldn't be that way for GCA.

I was diagnosed with PMR about 15 years ago but all my doctors ask me about GCA related symptoms. I had temporal facial pain with electric shocks around my left eye (trigeminal neuralgia).
https://www.ninds.nih.gov/health-information/disorders/trigeminal-neuralgia
I went to the emergency room several times when the electricity wouldn't stop. My wife would have to go with me because I would be unable to speak.

I also would have frequent visual disturbances and some vision loss that wasn't permanent. My rheumatologist offers me a semi-apology for having to ask me about symptoms of GCA even now -- 15 years after being diagnosed with PMR. I just say that I understand why the questions are asked and respond by saying, "to my knowledge --I don't have GCA."

All I have to do is call my ophthalmologist and mention that uveitis might have recurred. The only question they ever ask me is "How soon can I come in to be seen?" Uveitis can cause permanent vision loss too. I'm usually seen within hours of calling to report my symptoms of uveitis.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
When my ophthalmologist does his exam for uveitis, he reassures me that he doesn't see signs of GCA. He says my optic nerve still looks healthy but the inflammation inside my eye is usually severe. Prednisone 60 mg is what I usually start with for every flare of uveitis.

Once I went to a rheumatology appointment with a red eye. My rheumatologist asked me if I knew how serious it could be. She called the ophthalmology department herself and sent me there to be seen.

Only once did I fear I would be blind in one eye in spite of 100 mg of prednisone. Now I see a "uveitis specialist" rather than a general ophthalmologist.

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Thank you for your feedback. It sounds like the doctors you're seeing are a lot more attentive and knowledgable. This is why we're getting a second opinion later this month. We are very fortunate that we are able to get in to see the Chief of Rheumatology. I think they know we're upset and serious. Otherwise, I'm not sure we would have been able to get to see her. We'll see how it goes. All I know is I need to feel confident in his rheumatologist and at the moment, I don't. So it's time to look for a new one. If all goes well with the appointment later this month the Chief of Rheumatology can become his new rheumatologist. So far she's the one who did the most good for him when his doctor was out of the office. Aside from an emergency room doc.

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@isabelle7

Hi @charlotte61
I can't say for sure you can avoid it. But. Having been through this horrifying experience I would say you have a lot more knowledge than we did and knowledge, they say, is power. Honestly, if you were to get the symptoms of GCA my first move would be urgent care for labs to check inflammation levels. Those come back rather quickly. If there's a rise, I'd go to the ER and tell them what you suspect. Explain your symptoms, that you've had PMR and are at high risk, and that you do not want to wait to chance blindness or stroke. That seems to get attention. Just listen to your body and don't worry about it because you don't need that additional stress. You know what to do now. The worse is not knowing. And be sure you have a good doctor who will listen to you. It could be something worth discussing at your next appointment. You could share what happened to us and that you want to be assured this will not happen to you. Good chances are you won't get it. Most people with PMR don't. Stay positive, do the things you know work for you and I wish you all the best in this journey. I'll be posting updates as things progress. Next is the results of the CAT scans next week.

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Thanks Isabelle7! And I hope all goes well with your husband. Keep us posted.

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@charlotte61

Thanks Isabelle7! And I hope all goes well with your husband. Keep us posted.

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I will and you keep us posted too.

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How do you get a diagnose for GCA? Can an eye doctor detect GCA?

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I'm glad I dropped in on these conversations. I take 5mg of prednisone for PMR. Lately, I've been experiencing difficulties reading. The last time I had my eyes checked, it was determined that it was "dry eye" syndrome. Years ago, I had iritis and was on the verge of going blind when the doctors in Spokane diagnosed it. I was the second person that they had been able to stop going blind with cortisone. i don't have headaches, fever or any of the other symptoms mentioned. Even so, I think I'll schedule an appointment with my optometrist tomorrow. I am assuming GCA refers to glaucoma. Correct me if I am wrong.

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@elizadolittle

I'm glad I dropped in on these conversations. I take 5mg of prednisone for PMR. Lately, I've been experiencing difficulties reading. The last time I had my eyes checked, it was determined that it was "dry eye" syndrome. Years ago, I had iritis and was on the verge of going blind when the doctors in Spokane diagnosed it. I was the second person that they had been able to stop going blind with cortisone. i don't have headaches, fever or any of the other symptoms mentioned. Even so, I think I'll schedule an appointment with my optometrist tomorrow. I am assuming GCA refers to glaucoma. Correct me if I am wrong.

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We are glad you dropped in!

GCA refers to Giant Cell Arteritis and it isn't the same as Glaucoma. Do you have glaucoma?
https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758#:~:text=Giant%20cell%20arteritis%20is%20an,is%20sometimes%20called%20temporal%20arteritis.
If you ask me ... you should definitely see an "eye doctor" regularly simply because of having PMR and being on Prednisone. Your history of iritis complicates things even more. At the very least you need annual visits. I won't dwell on the potential eye problems that Prednisone can cause.

I had frequent "unscheduled visits" with an ophthalmologist because of Uveitis which is a global term that includes iritis. The type of uveitis you have depends on which part or parts of the eye are inflamed. It doesn't matter because all types of uveitis are serious.

ANTERIOR UVEITIS affects the inside of the front of your eye (between the cornea and the iris) and the ciliary body. IT IS ALSO CALLED IRITIS and is the most common type of uveitis.

INTERMEDIATE UVEITIS affects the retina and blood vessels just behind the lens (pars plana) as well as the gel in the center of the eye (vitreous).

POSTERIOR UVEITIS affects a layer on the inside of the back of your eye, either the retina or the choroid.

PANUVEITIS occurs when all layers of the uvea are inflamed, from the front to the back of your eye.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734

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I’m Bob, 85 year old male with GCA, diagnosed 7 months ago. My understanding is GCA is caused by inflammation. Although I have regularly received cardiologist care for 20 years the word inflammation was never once mentioned!
GCA suddenly caused loss of vision in one eye and 50% (my estimation) in the other. Miserable Experience.
DO ALL you can to prevent GCA

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@bws

I’m Bob, 85 year old male with GCA, diagnosed 7 months ago. My understanding is GCA is caused by inflammation. Although I have regularly received cardiologist care for 20 years the word inflammation was never once mentioned!
GCA suddenly caused loss of vision in one eye and 50% (my estimation) in the other. Miserable Experience.
DO ALL you can to prevent GCA

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Sorry to hear you lost so much vision from GCA, Bob -- that must have been so scary. Like PMR, I believe GCA is also caused by inflammation. I'm trying to do everything I can to minimize inflammation in my body through diet, supplements, stress relief, etc., even though I am also taking prednisone for PMR, but currently working at tapering down my dosage.

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I was tested for GCA because I had a hearing loss in my left ear from PMR. They took a sample of my temporal artery and tested it and it came back negative but they said that it’s not a definitive diagnosis because it just might not show in that sample of artery… frustrating.

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