Vasculitis (especially CNS/cerebral) and incontinence

[vivdunstan]

I was helping another cerebral/CNS vasculitis patient tonight about incontinence. Which can be a common symptom of brain vasculitis, whether a primary CNS/cerebral vasculitis, or secondary brain involvement from a systemic vasculitis like GPA. But vasculitis medics frequently under recognise incontinence as a symptom. I wrote up some thoughts about this in the Vasculitis UK charity newsletter in Autumn 2018. It's online at vasculitis.org.uk/about/new... - the article is on page 13. It was mainly a heads up for our consultants, to say "Help your patients more!" re this. But the article may also be of interest to fellow patients who didn't see it back in 2018. It can be embarrassing to talk to a medic about incontinence if you have that, whether bowel or bladder or both. But they need to know, and there is practical help you can get. Anyway just a heads up. I thought it might be worth reposting this tonight. The image has the text of my article, but the article is also in the charity newsletter issue PDF at the link given.

[Tbrz]

Thank you for this. This has never been mentioned by any medic, so appreciate you highlighting this.

[Investigator1]

Hi Viv, it certainly made me sit up when I read your piece, I openly admit it all came as news to me but I guess I none of us should be surprised by anything regarding Vasculitis. My heart goes out to you. Nick.

[whitefishbay]

Never heard of it but very sympathetic (as I have to pee 50x a day).

[vivdunstan Volunteer in reply to whitefishbay]

Have you talked to your medics about the bladder problems? Because there may be things that might help / make it more bearable. Good luck!

[blackgolf]

I was prescribed solofenacin which has helped me loads I was terrible before I had them only draw back I have had a couple of infections but seems to have settled now. Would definitely recommend them