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GCA conserns

Polymyalgia Rheumatica (PMR) | Last Active: 2 days ago | Replies (40)

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@maye

My experience with GCA is similar in that I too have large vessel vasculitis GCA , no cranial or temporal involvement after one year of pmr.
There were very few symptoms, just occasional night sweats, no pain , no head and neck or visual symptoms . Subsequent Blood tests showed high CRP and high ESR , low Haemoglobin.
Pet scan confirmed extensive GCA of large vessels. You don’t feel inflammation in your aorta!
I had a small pericardial effusion ( fluid around my heart) after extensive cardiology checks seems I have no cardiovascular damage including no aortic damage.
Started 50mg pred and 162mg Actemera sub cutaneous weekly , simultaneously . A four month taper off pred schedule. Now Down to 10mg pred and Dr is confident I’ll be off pred and continue actemera for 12 months as a mono therapy. He says any relapse will be treated with Actemera alone and no more pred .
Anyway just be aware GCA is not always temporal and symptoms can be few .
I’d actually been travelling from Australia around Europe, had been walking, doing long haul flights etc … and was feeling great at time of diagnosis. Only the night sweats alerted me to something was not quite right, and sent me to the Dr when I got home .
Dr told me he had 10 new GCA patients in the last yr , and all of them presented very differently.

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Replies to "My experience with GCA is similar in that I too have large vessel vasculitis GCA ,..."

This is good information, appreciate you sharing, I don’t feel my rheumatologist is doing enough, no regular bloodwork?!
Nothing really,
I’m going to insist that he do more at next visit.
Thank you