On Monday the National Institute for Clinical Excellence held a meeting in Manchester to discuss the licensing of Rituximab in the treatment of GPA (Wegener's) and MPA (Microscopic Polyangiitis). Vasculitis UK was represented by two Trustees (both with vasculitis and both being prescribed Rituximab) so they were able to give a first-hand patient perspective of taking Rituximab and its benefits. We will keep you updated as to the eventual outcome.

6 Replies

  • Not sure why it is being discussed just for use for WG patients? What about the other vasculides? I've got Churg-Strauss.

  • It's for WG and MPA but I guess they have their reasons. They have to start somewhere but the first hurdle will be to get it licensed for these two vasculitic diseases - and this is by no means certain until they have finished their deliberations. Then no doubt further discussion and medical input will have to take place regarding the other diseases.

    The drug is used by a number of hospitals already. Some have their own Trust protocol regarding its use (in different situations), for others the physician has to make a case on individual merits.


  • Hi there, i have WG and when i mentioned to my consultant about rituximax, he more or less said i wasnt "ill enough" to have this drug! Which i found really odd and was very confused to say the least! Is it down to a postcode thing?

  • Hi Mandijt

    Well, some people believe so about the postcode lottery. However, even for those Trusts where they have a protocol in place, giving Rituximab isn't the most appropriate treatment for some patients. Research shows it's no better than Cyclo for achieving remission (although there are other reasons why some of might prefer Rituximab) but it has been shown to be better for some relapsing cases. It's Rituximab for me if I relapse again - but I'm not going to relapse, repeat after me "I am not going to relapse".

    Probably your consultant feels that you are responding well on whatever drug regime you are on, and would want to save the Rituximab for some possible future eventuality. We have to remember that even Rituximab isn't the panacea for everyone, although the majority of those who have tried it, and where it was successful, sing its praises from the rooftops.


  • The licence application by the drug company to NICE will only include GPA (WG), MPA & CSS. This doesn't preclude using the drug for other forms of the vasculitides but if approved it will mean Rituximab can be used as a first line treatment and patients won't necessarily have to not have responded to more toxic drugs, such as cyclophosamide, before being considered.

    It was apparent from the meeting that the application will have to robustly demonstrate the cost benefits both in financial and quality of life terms. Obvious to anyone here but we're not the ones who need convincing. The final decision, if NICE put the drug forward fro approval, lies with the Minister for Health. Anticipated date is appropriately 1 year from now.

    Rituximab hasn't been demonstrated to be clinically any more effective as other regimes but does appear to be better at maintaining remission. If your consultant is reluctant to use it I'd ask why (if your disease is active, irrespective of how aggressive it is, then it needs 'quietening) and then if the answer isn't satisfactory I'd suggest considering a different consultant.

    Healthy wishes.

  • It's beginning to sound as though N.I.C.E is more confused than we are! How NICE of then!

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