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GCA conserns

Polymyalgia Rheumatica (PMR) | Last Active: Jun 19 1:29pm | Replies (36)

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@nyxygirl

Hello @redboat I was also wondering how you were ! What an informative story -- so NO GCA - but you were/are Prednsione -non responder for PMR ? did you retire ?

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Replies to "Hello @redboat I was also wondering how you were ! What an informative story -- so..."

Hi @nyxygirl, thanks for your message. In terms of the GCA diagnosis, the doctors say I have "presumed GCA" or "non-cranial GCA". I think they call it this because imaging has never revealed it, but my symptoms and blood tests results were so much worse than what is usually seen with PMR. The truth is, all they really know is that I had a tremendous inflammation event. It had many PMR-like symptoms, extraordinarily high inflammation blood markers (CRP was measured at 347 mg/L), and multiple other inflammation symptoms that aren't easy to explain. Fortunately, the treatment regime (first Prednisone, then Actemra, aka tocilizumab) has been effective. Especially the Actemra is working well. Unlike Prednisone, Actemra has no side effects that I can feel, so there's no rush to get off it. Blood tests do show a part of my immune system, known as C4 complement, is below normal, which is expected with Actemra. I guess this makes me more vulnerable to infection. Also, Actemra does slightly raise my liver scores, but they are still in the normal range.