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GCA with or without symptoms?

Polymyalgia Rheumatica (PMR) | Last Active: 2 days ago | Replies (3)

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Profile picture for jabrown0407 @jabrown0407

In keeping with my other comments, there is no one way to do anything with respect to PMR/GCA. My journey is very different to get to the GCA Dx.
Inflammation high 130's in 2019, Dx with PMR one year later.
Was able to taper to zero, no problems. Within 30-60 days inflammation back. Several cycles of this. Local doctor in teaching hospital was stuck on PMR since I had no cranial, eye, temple, face symptoms. Finally went out of state to possibly the leading teaching hospital on GCA vasculitis. They Dx asymptomatic GCA 5+ years after initial PMR symptoms.
It has done aorta damage and caused a dissection in my neck. I have a new aorta specialist as well as two new neck doctors.
Watching for classic GCA symptoms needs to be tempered with common sense also that something just isn't right. Not fear but tell tale signs.
I keep a running list of symptoms and progress. It's exhausting sometimes. The majority of my doctors appreciate my efforts and have used them along with their testing to help guide my treatments.

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Replies to "In keeping with my other comments, there is no one way to do anything with respect..."

@jabrown0407
I'm sorry to hear about the GCA and the damage caused by it being undiagnosed for so long. I pray you'll be ok and get all the help you need. Just diagnosed with PMR 7/31.
It is so true that we need to research our own symptoms and let our Dr's know what we're experiencing, and what we'd like them to check into. It's how I found PMR. Searched my symptoms with all my blood test results.
If I hadn't asked to see a Rheumatologist I have no idea how many more months I would have been suffering such brutal pain and disability.
Your common sense can often guide us best and asking the Dr's regarding what we're feeling. We know our bodies better. Blessings.