Re positive C ANCA on for 6 months but not for past 3 years

[Persi]

When I was first very ill and not diagnosed correctly by my local hospital I had a Positive C ANCA. Have been under wonderful vasculitis centre since but have never had a positive C ANCA since. Is this recognised as being common?

[Celtic PMRGCAuk volunteer]

Persi, have you been diagnosed with PMR and/or GCA? If not and you have another vascular condition, you are likely to get more helpful replies on the Vasculitis forum on the following link:

healthunlocked.com/vasculit...

[Persi in reply to Celtic]

Yes I have been diagnosed with GCA and Pilymyalgia and. Va sculitis. Specific type vasculitis has not been determined. My lungs are damaged m(since 2012), nerve damage to both ears (hearing aids x2), severe tachycardia since really bad generalised flare 16 months ago. Sight has been affected. Flare 16 months ago caused haemorrhage in left eye socket although GCA on right.

Have had Methotrexate, 2 Rituximab, currently on MMF for last 3 months. Every time I go below 28mgs prednisolone I have terrible chest problems and end up on antibiotics, 49 mg pred. Nebulisers, tachycardia ++++.

I wondered if it is common for positive C ANCA to disappear in subsequent blood tests, as Lupus antibodies may not always be detected in blood tests

[PMRpro Ambassador in reply to Persi]

GCA and PMR are both vasculitides - but what you describe is not typical of either and sounds much more like one of a few forms of vasculitis. Positive cANCA is rarely seen in GCA at all as far as I know so noone here will know much about it - as Celtic says, VasculitisUK are far more likely to have the knowledge to answer your question.