Cns vasculitis /ritmixuhib

[arny12]

Hi. I was diagnosed with cns vasculitis in 2015 after I had at least 2 strokes, I was then took to Walton after Dr Holt took on my case. I was put on steroids and methotrexate but did not tolerate it very well and I had a flare up approx a year later which resulted in my vision going. I then had 6 pulses of cyclophosamide and all was OK for two years, my vision came back a bit until I had a stroke of the brain stem. I have no idea how bad a stroke it was. I was given another 6 pulses of cyclophosamide and had another relapse about a month ago. I now have more vision problems most notably nycostagmus. I have now been told I'm going back to Walton for an ritmixhub in fusion which I have found out is useless for my condition. Any ideas on whether I should refuse treatment cos I have had enough of this.

Sorry for spelling and grammar but I can hardly see

[vivdunstan Volunteer]

It's true that Rituximab hasn't been proven to be as successful for cerebral/CNS vasculitis and other non ANCA forms of the disease. But that's largely because the research hasn't been done, due to low patient numbers.

Some patients have found it's helped their cerebral/CNS vasculitis though, so if I was you I'd give it a go. It's good to be offered it - because of the lack of research evidence it can be very hard to get NHS boards to approve it.

The alternative would usually be more Cyclophosphamide. But you have had a lot of that already, and there is a lifetime limit to how much you can have it because of the toxicity. Rituximab can be a good alternative,

I'd take it if I were you. If you refuse treatment you are risking death.

Good luck!

P.S. I have cerebral vasculitis, since 1994, though I've never had Rituximab. My medics thought it might help me, but knew it would be hard to get approval for.

[U06334 in reply to vivdunstan]

I was given mycophenolate mofetil (mycophenolic acid nowadays), predisolone and lansoprazole for CNS and a stroke in 2008 when I was 43. Sorry I can’t remember the dosage. I’ve been very well since then (although I think I am in the early stages of Polymyalgia now). I had a dozen tests after the stroke including a carotid & heart scan, spinal tap, meningeal biopsy (both negative) and a revealing angiopathy where the neurosurgeon could see a slight problem in a small cerebral artery. My CRP and ESR blood tests were slightly elevated. My results weren’t much to go on but enough for neurologist and nephrologist to diagnose. My mum had GCA last year and was given predisolone so Vasculitis seems to run in my family. I hope that helps. Good luck.

[arny12]

Thank for the reply, tbh honest I have been in a hospital bed for 9 months after three weeks of the doctors arguing if i had another stroke and death seems like a good alternative

[johanna-68 in reply to arny12]

I just had to reply after seeing your post. I don't have CNS vasculitis but have PAN. I just wanted to say please hang on in there. You have been through so much bless you. I'm just hoping that things get better for you. Tell your consultants how you are feeling, they maybe able to suggest further support.

Take care

Johanna