Rituximab

[sarahdollygirl]

Hi all!Can anyone tell me why rituximab treatments are restricted, I was told, to 2 years? I realise cost is involved, but I had my treatments in france, but was still refused it here in the uk. Back on Methotrexate now..

[Grizzly-bear]

I’m in the U.K. and been told I’ll be in rituximab for 4 years and then I’ll have a review. I’m currently just over one year into treatment. I was told that this is because I have PR3 ANCA vasculitis so I need to be on rituximab longer as it has worse relapse outcomes than non-PR3, so the rituximab treatment plan is longer. I was hoping after the 4 years to trial coming off immune suppressants but that might be too much of a pipe dream.

[2534 in reply to Grizzly-bear]

You may be entitled to the new tavneos (avacopan I think) which should be available according to NICE guidelines at the beginning of the year. It is not an immunosuppresant but is designed to be an adjunct to rituximab

[eh66]

I have been on rituximab for about two years in Scotland. The trouble is two fold; it is a post code lottery as to what treatment you get, and then how good your consultant team are. Reading others posts, I am glad I am with a Vasculitis specialist rather than a general rheumatologist.

[2534]

Hi. I should double check the availablility of RTX. For example, I do not have anca issues but I am categaorised as having mpa which does give me access to RTX. Many well known rheumatologists said I did not qualify for RTX until I reached David Jayne several years later and he said I DO qualify as I have mpa. He is close to the development if NICE guidelines, so he tends to know!

[Suzi70 Administrator Vasculitis UK]

There are many factors involved

1) Following the guidelines for use of Rituximab is essential - taking into consideration refractory disease ( unless being used in clinical trials )

2) The hospital involved has the facilities and the qualified staff to administer biologics

3) The overall cost of the treatment including facilities and staffing

4) The patient’s overall health - Rituximab knocks the immune system out or virtually out - this leads the patient vulnerable to all kinds of infections etc

5) it actually doesn’t suit some patients and all patients having Rituximab should be closely monitored

Hope this helps

Susan

[ZiggyDiego]

I understood that if I could tolerate methotrexate & it kept my PR3 ANCA GPA in check, that’s great. But it didn’t. Rituximab has been the only thing to stop me from relapsing, but it doesn’t fully stop me flaring so I’ve been on it 5 years. In that time I’ve had one relapse and one bigger flare of scleritis. I’m sure a lot depends on how active your disease is.