Churg Strauss - stopping Rituximab?

[sarahdollygirl]

I am being treated here in France for Churg Strauss with 6 monthly infusions of Rituximab (I think it is called something slightly different in the uk). To my surprise I have been told that has to end after 18 months which will be after my next infusion in November. Has anyone else had this happen? No mention of what happens next. I was taking 25mg of methotrexate before, and when the consultant told me to stop I had a very bad flare and I really dont want it to happen again!

[jgold]

Here in the UK I have been given Rituximab for MPA and it has been very successful. I was told repeat infusions would likely be needed after six or twelve months. In fact we went 18 months before a flare occurred which wouldn't go away of its own accord, so I was given another Rituximab dose.

I have read quite a lot about Rituximab and can't recall seeing anything about limiting the period for which it can be given. Indeed, other things being equal (which admittedly may not be the case as we are all different) it seems to be preferred to other treatments (e.g. steroids) as a long term maintenance therapy because it has fewer potential side effects.

Of course official approval of treatments for any disease is influenced by cost considerations and I believe Rituximab is more expensive than some other vasculitis maintenance therapies. I'm not familiar with the French health service regime, or how it's financed, but I wonder if this might have something to do with what you have been told.

Alternatively, might it just be a French - English translation problem? Do they mean it MUST end after 18 months, or is it that they HOPE that the need for it will end as the vasculitis may be successfully driven into remission?

I suggest you ask your consultant for a full explanation of the reasons for Rituximab treatment apparently having to end after 18 months, tell him of your concerns, and then take things from there.

[sarahdollygirl in reply to jgold]

Thanks for your interest...certainly Rutiximab has given me no problems compared to Methotrexate which affected my stomach badly. I would prefer they continue rather than risk another flare as I have heart damage as a result of stopping the methotrexate! I didn't see my consultant at my last appointment, as it France and August he was probably on holiday! I should catch up with him in November. Thanks for your help

Sarah

[Hidden]

Hi,

I think part of the problem here is that there is very good evidence that Rituximab is effective at putting patients into remission but very little evidence to support its use as a maintenance medication ( yet ).

Hopefully that will change next year when the RITAZAREM trial reports as it’s looking at Rituximab as a maintenance medication.

In the meantime it depends on the hospital and Consultant concerned. It’s a similar situation in the U.K. with some patients able to access Rituximab as a maintenance drug and others having to stop after 18 months.

Have you discussed your fears with your Consultant and come up with a plan of action if you flare?

[jgold in reply to Hidden]

Very interesting. In my case Rituximab has been used as a maintenance drug - replacing azathioprine which was becoming less and less effective. I look forward to reading the RITAZAREM trial report.

[Hidden in reply to jgold]

Some details here

trialsjournal.biomedcentral...

[sarahdollygirl in reply to Hidden]

Thanks all...I will certainly discuss all this with my consultant in November

[jgold in reply to Hidden]

Thanks - very interesting.

However, it provides one of the many examples of the complexity of understanding vasculitis issues, as this RITAZAREM trial specifically excludes patients with Churg Strauss ( see trialsjournal.biomedcentral... - Additional file 2: Inclusion and exclusion criteria for RITAZAREM trial; full list of enrollment requirements) - such as sarahdollygirl who started this thread!

[Hidden in reply to jgold]

Yes, most trials into ANCA associated Vasculitis exclude Churg Strauss and concentrate on MPA/ GPA. There are trials into a different biologic for Churg Strauss which is also used in eosinophilic asthma ( mepolizumab ). Problem is that Churg Strauss is one of the rarer Vasculitis variants and there appears to be 2 different subtypes ( Vasculitic and allergic ).

[cazy-g]

Hi sarahdollygirl ,I have been having Rituximab since Feb 2012 and have had one relapse of G.P.A in between .Initially full doses of 1 gram 2 weekly followed by 500mg as opposed to 1 gram at 6 monthly intervals for 2 years . My consultant feels and my symptoms indicate that I have reached a long quiet period and as such am to have a break from rituximab in order to allow my immune system to recover .Maybe that is the reason for the break in your treatment however the consultant sees me 3 monthly and would respond earlier if required .I also take 5 mg prednisolone as maintenance .Ask for clarification of reasons ,stay l