I have cnsv and have been treated with pred and cycophosimite since 2012 had six cycophosimite 2012/2013 then 4 2014 the last four only kept

[Louzoejf29]

Things at bay 2 months, now been told need further six, had one five to go. Consultant talking about possible retuximabe, but has to apply for funding on this. Anybody any info on benefits of change?

[Chris-Bromsgrove]

Hi

I have no first hand knowledge of CNSV or Rituximab but there is helpful information on both on the Vasculitis UK website. It does appear that relapses are more common with CNSV than other forms of vasculitis. Ritiximab has been very successfully used in cases of ANCA associated vasculitis where Cyclophosphamide has not brought the disease under control. However I am not sure whether CNSV is associated with the ANCA antibody as with the more common forms of vasculitis such as MPA, GPA and Churg-Strauss. Hopefully other members may have more first hand experience to share with you.

Chris

[vivdunstan Volunteer]

CNSV, or cerebral vasculitis as it is also known, doesn't have a strong research basis for using Rituximab. It's not an ANCA-associated form of vasculitis, and is extremely rare. This means that it is very difficult to conduct large enough research studies of patients to see if any treatment is beneficial.

For some people with CNSV Rituximab doesn't help at all. For others it can. It seems to vary case by case. So it is worth trying, but your consultant may struggle to persuade the funders to fund it, because it's not a form of vasculitis where research has shown that it's a beneficial form of treatment.

I haven't had Rituximab myself. I have cerebral vasculitis too. My consultant didn't give me Cyclophosphamide for many years, initially for fertility concerns (I was only 22 when fell ill in 1994), later cos it might worsen my extremely severe bladder incontinence. I asked for Cyclo in 2012, and had 6 infusions over the summer months. It didn't seem to help me, though I have since managed to reduce some of my other immunosuppressive pils, so maybe it helped more than we thought. Meanwhile I carry on with other immunosuppressive drugs. If they don't work long-term my consultant is favouring trying me on Tocilizumab, which may have a better chance of success in my case than Rituximab. Each case is different tho.

Good luck!

[Louzoejf29 in reply to vivdunstan]

Thanks for replying, I don't think I made it clear that I have been having treatment since 2000, mostly high dose pred until started on cycophosimite in 2012,