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How often does PMR progress to GCA?

Polymyalgia Rheumatica (PMR) | Last Active: Mar 29 2:47pm | Replies (115)

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@isabelle7

@charlotte61 In this case knowledge is power. Knowing the symptoms to look out for is so important. We had no idea when we started this PMR/GCA journey. Sites like this have been a lifesaver! Also, if you have PMR it is my strong recommendation that you also have a rheumatologist following your progress. Our GP's don't know nearly what the rheumatologists do. Having said that, our rheumatologist made some serious mistakes in my husband's case and we're meeting a new one next week. My strongest recommendation for anyone with PMR who develops classic GCA symptoms is to go straight to the ER and tell them what you suspect. They have the equipment to run tests quickly and to get you treatment right away. We learned this the very hard way and it could have cost my husband his vision or even his life. Turns out he's got a very severe case of GCA that was initially misdiagnosed as TMJ and stress headaches by our GP even though he already had PMR, and his rheumatologist didn't believe he had it. I had to yell and scream for her to order the biopsy which proved he had it. She's even admitted this is the worse case she's ever seen. No apology for putting him/us through a week of sheer hell.

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Replies to "@charlotte61 In this case knowledge is power. Knowing the symptoms to look out for is so..."

I'd definitely be looking for a new rheumatologist! How could she not suspect GCA in your husband, given his symptoms and the fact he already had PMR? Sheer negligence on her part! I'm glad you persisted and got your husband the care he so obviously needed.

I don't have a rheumatologist. When I suggested it to my GP he said that a rheumatologist probably wouldn't be able to add anything more to what we already know (?!). Besides that, I live in a small town with no rheumatologists, so it would mean travelling to get to one and probably months on a waiting list to even get an appointment.