rituximab again

[quinnster]

further to my earlier question on rituximab,does anyone know if it is possible to ask your local health authority or hospital,what there rules are for giving out rituximab and how often

and how would i go about this

[lisa-ranyell Vasculitis UK Volunteer]

Until there are definite guidelines set by NICE for the use of Rituximab for vasculitis I would be surprised if a any trust would say they have set rules, but rather that each case is considered individually. The generally recognised protocol when it is used seems to be 2 infusions 2 weeks apart every 6 months for 2 years, but again this can be varied by the individual consultants. I would think your consultant would be able to tell you their hospital policy. I have my fingers crossed that there will be a better policy in place by the end of the year, and if I am chosen to take part, I shall do my utmost to put the case for its use across at the consultation in June, and more people will benefit from Ritux in future.

[anthony01 in reply to lisa-ranyell]

I will keep fingers crossed that you are chosen! as I do not know what my consultant is going to do next, as he says it is too expensive and to make a case would not be accepted as one of my blood results has stayed normal (not sure which one). I believe and understand he has tried everything and we are on the last type/mix of medication which is not working. Cyclophosphide was the only one to work but not allowed more, as it may cause cancer?

[Bill1959]

Good morning

I had my first 2 Rutuximab in Aug 2012 and the next was due on 1st March 2013. I contacted the Rhumaotologist to remember them about it . I was given an appointment when got there I was told that the next one was due in June 2013 so that makes it a year between infusions I just don't get it . One says 6months another says 1year . Any information would be great as have no confedence in the Rhumatologist . I have been seeing her for about 6years and only twice has she examined me .

[nannie]

I had the 2 treatments, 2 weeks apart last June. Then another treatment in January this year. Margate hospital wouldn't pay for it so I go to Canterbury. Like Anthony they had tried everything else. If your hospital can't do it, ask if you can be treated elsewhere.

[antony9500]

It all depends how the CCGs decide to fund local priorities - if I was you I'd familiarise yourself with this: enfield.nhs.uk/future_plann... and it might even be worth going to a meeting/contacting members.

I asked my son to research a similar question regarding future funding for me (he works in parliament) above is the response that he gave.

The link is to Barnet and Enfield hospitals but I imagine would be standard.

read some but assume that, in my younger son's case, will be wee what is what at the six month stage and fight for what we believe is the right path to follow.