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How often does PMR progress to GCA?
Polymyalgia Rheumatica (PMR) | Last Active: Nov 2 9:39am | Replies (128)Comment receiving replies
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.
Replies to "Hi @charlotte61 I can't say for sure you can avoid it. But. Having been through this..."
Thanks Isabelle7! And I hope all goes well with your husband. Keep us posted.
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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.