I noticed on my latest consultant's report that my diagnosis has changed from GCA to systemic vasculitis. Can someone explain what systemic actually means please?
My symptoms changed from the side headaches (2009 to 2014) to nose and throat problems, loss of hearing-steroid responsive (2014 to now). Started rituximab March this year. Thanks in advance.
"Systemic: relating to the whole of an organism rather than just a part"
GCA is a systemic vasculitis - but some doctors don't appear to appreciate that and seem to think GCA just affects the temporal artery (which is probably why they use the terms GCA and temporal arteritis interchangeably). Just because the temporal artery biopsy doesn't show the giant cells that give GCA its name doesn't mean the patient doesn't have GCA. It can be affecting any artery with a particular structure to its wall.
But in the other arteries it is impossible to do a biopsy - it would mean a full op, damaging an artery, and that isn't on. There are various forms of imaging that show inflammation - but not the cells, there are other forms of inflammation besides the typical giant cells found in GCA. So systemic vasculitis covers them all: GCA is a systemic vasculitis, not all systemic vasculitis is GCA.
I'd be interested to know why the diganosis was changed though since your newer symptoms are also often listed as symptoms of GCA and I know people with biopsy-proven GCA who have them. And does the rituximab work well?
I also have been diagnosed with systematic vasculitis. As I understand it, it is vasculitis at a very basic system-wide level and can attack any part of the body. It is not restricted to any one set of organs. At first I was thought to have cerebral vasculitis, due to demylination, partial vision loss, single-sided deafness and stroke-like symptoms, but since I'm on immuno-suppressants and my lesion is on the parietal lobe/speech area of the brain, I won't allow a brain biopsy. Spinal tap showed protein etc, and I have meniere's as well as motor, ocular, joint, bone and vascular issues. The treatment apparently is the same, regardless of the type, although the more specific the area, the more treatment can be pinpointed.
I've been on may drugs; am now on mycofenalate and prednisone, because my earlier (last year) treatment with mercaptopurine reacted with an anti-biotic and gave me multiple organ failure, from which I am (thankfully) recovered...except for the diabetes, which is a small price to pay.
Hi Maisie,
Systemic just means that your disease is affecting quite a few body systems as opposed to localised where only one part is affected.
Systemic Vasculitis isn't a diagnosis as such. There are over 18 different variants of Vasculitis which are classified according to the size of blood vessel affected ( small, medium and large ).
GCA is a large vessel Vasculitis, Rituximab is licenced to treat ANCA associated Vasculitis which mainly affects the very small blood vessels.
It sounds to me as if you need some more information from your Consultant, specifically what variant of Vasculitis you now have. Symptoms can certainly change over the years and some patients do get overlaps between different Vasculitis variants.
I would have a look at our website as well to gain a better understanding of Vasculitis in general and the specific variants
sinus related issues before diagnosis?
Change of diet
Change in taste.
Getting a diagnosis
