rituximab

[quinnster]

can i ask what the timespan people round the country are given this drug

seems to differ quite a lot around the country

are you given it only when you flare? or 2 years ? 1 year ? 6 months

i hd 2 doses 15 months ago and am told i only have it when i flare,this is in the north west area

would like to hear what happens elsewhere in the country

thanks

[lisa-ranyell Vasculitis UK Volunteer]

I think at the moment it is down to the individual hospital trust as strictly speaking this drug is not yet licenced by NICE to treat vasculitis. Hopefully there will be formal guidelines by the end of the year and I am hoping to be involved in the process of licensing by acting as a patient expert at a meeting in June, so watch this space. I have been having 2 infusions every 6 months for the last 4 years. I live in the East Midlands.

[anthony01]

Yes Lisa is right, St.Georges are unable to give it to me in London, due to one blood level being OK and then the cost!... it is near April and there is no money!

My consultant is on his last line of medication for me; as little has worked, only Cyclophosimide after a minor stroke due to inflammation at the stem of the brain. I think he may have to refer me to another consultant/hospital, which I have names and places I'll request? so hopefully they will be able to help me. I will travel from one end of the country to the other, in hope it will help my condition as it must be going onto 4-5 years of different medications (probably cost more all these med's and consultations!! over these years)

[milliewin]

Hi, I am new to Rituximab and have only had one infusion and interestingly, another thing that seems to differ is that I only had one infusion and not the second after two weeks? I dont know if others only have one or does two tend to be the norm. I have been told that I will have them every 6 months? I live in the South.

[antony9500]

Morning,

My son diagnosed 5 weeks ago. He had the two infusions at the start. The hospital were keen to give even wasted one dose on the ward his second infusion was given over a 42 our period in HDU the first infusion in ICU over 24 hours

As to the post 6 months we have been told it may depend on funding and/or is the decision made then or left until first sign of a flare up.

We have been happy with hospital so far and will do what is necessary nearer the time

The 'Mills Gang" told us about Rituximab but the docs seem to know about it and may have suggested it plus on advice from the gang we mention Dr .Jayne and he was phoned for advice which was taken (in discharge notes)

We live North London and come under Barnet/Enfield.

The funding rules change in April

I have also been told that this is an area that your MP can sometimes influence decisions

[DevonLottie]

You're right, it differs around the country but I understand the latest wisdom is to administer the drug every six months whether there is a flare or not - evidence suggests this has the best long-term outcome for staying in remission (information from top consultant in vasculitis). I am having just one dose this time due to my immunoglobulin levels being low but have always had two in the past. This will be my last dose for present I'm told ( I believe this is for medical reasons rather than budgetry ones!)

[quinnster in reply to DevonLottie]

thanks for all the replies so far,keep them coming

[cazy-g]

I was given 2 infusions last year feb 2012 .I was informed that we would wait and see weather any further treatment was required .I am now having a relapse and am waiting for the due processess re health checks and funding before any further treatment .The problem is that I am now on a high level of pred again and have been for 2 months which in my opinion is too long due to the

[cazy-g]

cont ;long term health implications .The ritux worked well for me after 12 months of cyclo treatment which wiped me out .I live in the North West .It is now my opinion that to pre-empt any relapsees is the best way forward for me and will be raising this with my consultant when I have received the treatment I now need desperately . (Life on hold again )

[PoppyS]

I had Ritux infusions two weeks apart initially and then have had them every six months which I was told would continue for two years and then see what happens. Initially had Cyclo tablets followed by Azathioprine and steroids. Azathioprine had failed on two occasions to control WG which is ANCA positive and due to complications Azathioprine was causing it was considered that the other generally used treatments would not be sufficient to control the disease.

[quinnster in reply to PoppyS]

thanks to everyone who replied,and also all those who replied by e mail from the merseyside,cheshire and north wales support group,very interesting reading,and i will be asking some questions based on the replies,thanks very much