Does anyone know anything about Vasculitis and CNS vasculitis?

[mankyscotslass]

Specifically in Lupus patients?

Mum is in hospital with a Lupus flare, but has now had 2 fits and is dizzy and has poor vision. The doctors are now saying that its Vasculitis.

DH has just started a new job away from home, but has arranged a week off next week to look after the kids and let me get up to mums in Scotland, the doctors won't give much away on the phone.

Does anyone know anything about it or have experience of it? Have checked the Lupus site we use and although the information there is useful, someones experience or knowledge could help put it in perspective.

Thanks

has your mum been tested for celiac? - often linked to lupus & cns vasculitis as both can have autoimmune connection

Your poor mum.

lupus vasculitis is treatable with monoclonal antibodies (rituximab? i think). Not sure on how widely it is prescribed though... might be one of those postcode lotteries.

there are good immunologists around who know what they're doing - i guess your mum already has a consultant if she has diagnosed lupus.

the consequences of having had vasculitis depend on the severity, how long it's been going before treatment etc. The 2 fits may well be a consequence of the CNS vasculitis (rather than being a sign that she's developed epilepsy) - depends on location, timing and severity as to what the long term effects of those will be.

Fingers crossed for you

(hug)

forgot to say that vasculitis is basically your your blood vessels getting damaged because of inflammation

Thanks for the responses!

I will ask about celiac as well.

Mum has had a Ct scan, MRI scan, Lumbar puncture and again a different CT scan and some sort of angiogram style exam.

Her rheumy is in Manchester, but as she is ill at home on scotland (long story), she went to the local hospital, but she has just been moved this afternoon to the hospital in the area that has Rheumatolgy expertise, and from memory is also a centre for head injuries/neurological issues. She is on a neuro ward now.

Miserable, I will ask about rituximab, thanks.

Fingers crossed I get more information tomorrow.