Evaluation of Rituximab March 2013

[John_Mills]

The aim of the evidence is to help with the decision making process regarding whether Rituximab should be licensed by NICE for use in the treatment of Wegener's Granulomatosis (GPA) and Microscopic Polyangiitis

If you have not already taken part and you are receiving Rituximab for your Vasculitis there are still 4 weeks to go before John submits his report and evidence to NICE.

vasculitis.org.uk/news/nice...

[alybill]

Hi John,

I am due to start Rituxamab infusion for Churg Strauss on 8th January it may be soon to give you any feedback. Will Churg Strauss be considered in the trials. Many thanks

[John_Mills Volunteer in reply to alybill]

Yes CSS will be considered Alybill..Hope it goes well and please let us know how it goes..

[Bill1959]

Hi John I have MPA and have had 2sessions of Ritixemab . As for as I can make out my health . I can't feel the difference since I had it . Is it the case it only works for some people ?.

I am due for another session in feb this year don't know if its worth trying again your thoughts would be helpfull in this matter

Thanks Bill

[John_Mills Volunteer in reply to Bill1959]

Hi Bill,

For most people Ritux seems to have a dramatic effect, although not immediately. With vasculitis, the same disease affects different people in quite different ways. The current theory is that it's down to the genetic make up of the individual. By the same token, drugs work differently in different individuals. The hope is that in the near future it will be possible to read the genome of a patient then identify which drug will be moste effective for that patient. Work is currently being done to make this a reality. But that doesn't answer your question Bill. I think you should stick with the Ritux. It might be that it's controlling the disease but a lot of your problems are down to damage done in the past. There's no drug known that can make lung or kidney tissue that has died come back to life. A bit like youth really, once it's gone, it's gone, no matter how rich or famous you are. On that philosophical note ....

All best - John

[BronteM]

Hi John, I'm waiting for funding for rituximab as my reactions to MTX and cyclophosphamide have been bad. Will let you know how it goes.

[John_Mills Volunteer in reply to BronteM]

yes please BronteM..thank you

[BronteM in reply to John_Mills]

Sorry, but I won't have any info within your timeline. I went to the clinic on Friday, and was told that their request for rituximab funding was in, but they had no idea how long it would be before they got a reply. In the meantime I'm back on steroids alone, and have been told I can put them up if I think I need to. But I've worked so hard to get them down......

[BronteM in reply to John_Mills]

Just heard that the funding for my rituximab has been approved. First infusion on January 29 at Addenbrookes. Probably too late for for your meeting?

[milliewin]

Hi John, I am still waiting to hear when I am having my Rituximab so will let you know if it is in time?

Thanks

Sarah

[John_Mills Volunteer in reply to milliewin]

Please do Sarah... hope you hear soon...

[Alison-cov]

Hi John & Susan

Let me know if I can help I have WG (since 2006), I have received a total of 16 iv Rituximab. Rituxmab has defiantly had a big impact in my ongoing treatment; my last infusion was 19/11/12. Email me if I can help, I defiantly would not be here without Rituximab.

Regards

Alison

[John_Mills Volunteer in reply to Alison-cov]

Alison please email John about your experience with Rituximab.. [e-mail]

thank you

Susan

[rita-stosyth]

I have had WG since 2007, I took part in a trial of Rituximab and was in remission until 2010. unfortunately my local health service would not fund me for more Rituximab, was given other drugs which did not agree with me, fortunately I managed to get more Rituximab which made a great difference to my life. Unfortunately after the last infusion, 17th November 2012 I have not felt anywhere near as well. In December I woke up one morning with a pain in my chest, tingling arms and had hot sweats. Was admitted into hospital as my GP said I could of had a heart attack, fortunately it was'nt. When I went to clinic I was told it could of been a reaction of Rituximab. I hope it is'nt as in the past it has made me feel so much better

Healthy New yeR TO EVERYONE.

rITA

[John_Mills Volunteer in reply to rita-stosyth]

John would be very interested in this, please email him and explain your experience.. [e-mail]

thank you

Susan

[rita-stosyth]

Hulo All,

After reading my comments on Rituximab, I had omitted to say the chest pain was due to indigestion. Sorry if this was misleading.

Rita

[Dave_Buzzey_B]

Hi John and Susan, as you know I have had WG for 3 years now and have been on cyclophosphamide,methtextrate, and a host of other things, but unfortunately none have worked and my consultant has now written of for permission to start me on Rituximab, If and when they say yes I will let you know how it works out. good luck with the report.

Dave

[John_Mills Volunteer in reply to Dave_Buzzey_B]

Excellent news Dave.. keep us posted

[hornet]

My husband has Wegeners Granulomatosis and he first had retuximab in 2004 he went into remission but recently had a flare up and last year and they gave him Retuximab again, this was in July 12. But he has not been very well since having this and now after going back to the hospital he has now got blood in his urine and he is having problems with his nose and ears and also sweats, the hospital are going to do further tests, but they were saying that it might be just an infection, but not sure yet till he has further tests done, but he has not been as well as he was the first time round.

[John_Mills Volunteer in reply to hornet]

Let us know how things go with your husband please.. you can always email us [e-mail]

take care Susan and John