Hi all UK vasculitis sufferers/ Rituximab

[2534]

If you are on Rituximab could you tell me how many doses/infusions you have and at what intervals, please? I had two doses/infusions spaced a fortnight apart last year, but am now on 1 infusion every 6 months and they are calling it 'maintenance' RTX therapy. I am with David Jayne at Addenbrooke's so count myself lucky, but I don't feel I have had remission, and I am wondering if this is more to do with funding than with what is ideal in the way of treatment? I think DJ said there was no categorical dosing or spacing although I may not have fully got what he said. I also learn that RTX is about to come off patent, if it has not done so already, so should be a lot cheaper. Would welcome any comments Cheers now 2534

[Nadine99]

My husband had an initial 2 doses, 2 weeks apart and then every 6 mths for a total of 2 years, sounds exactly the same as yours. After the initial doses, it's called Maintenance but that doesn't mean you're in remission. We asked my husband's specialist at Norfolk & Norwich, after his final Rituximab, what happens now? It's a wait and see, monitor bloods, monitor symptoms, try to reduce the steroids, so, we wait and see. Certainly he's under control now but not necessarily in remission. Problems still exist but they're manageable.

Good luck

[2534 in reply to Nadine99]

Thanks Nadine99 that is useful

[yogarita1955 in reply to Nadine99]

hI

I have had 4 infusions 2 and again 2 two weeks apart I'm in remission now I have six monthly infusions and will see how I goes as thay don't want to give me more if I'm coping

but I think are thay waiting for it to come back rather than preventing it coming back anyone else like this

[Hidden]

Hi,

As Rituximab has really only been used in the past 5 yrs or so to treat ANCA Vasculitis there is a lack of evidence based data to back up its use as a maintenance treatment as opposed to putting patients into remission.

There is this study which compares Rituximab to Azathioprine in maintaining remission

nejm.org/doi/full/10.1056/n...

I am not sure that anything has been published to inform the use of Rituximab beyond 2 yrs.

I honestly don't think price comes into it. Even when patients are clinically in remission they generally never return to their pre illness self especially if there is permanent end organ damage in the Kidneys or lungs in particular.

You are in very good hands, no one uses more Rituximab to treat ANCA associated Vasculitis than Addenbrookes!

[2534]

Thanks Keyes Interesting and helpful- very

[2534]

forgot to add that it was Prof David Isenberg who said the patent will run out in 2 yrs and then it should be cheaper. That was roughly two years ago. Just for info.

[Hidden in reply to 2534]

You are right, the patent is due to run out.

It's impossible to manufacture an exact, generic copy of a biologic drug so it will be a so called " biosimilar " to replace it.

It remains to be seen if a cut in price will mean that more patients get access to Rituximab. There are strict NICE guidelines covering its use as Cyclophosamide is just as effective at inducing remission in ANCA associated Vasculitis.

[2534]

Yes unfortunately I had atrial fibrillation every second or third day on Cyclophosphamide and severe hepatic issues on Azathioprine!!

[LynneJ Vasculitis UK Volunteer]

I have just had my second lot of 2 doses. It has been 2 and half years apart for me. Maintenance dose. I was told that rheumatoid patients have theirs every 6 months.

I have MPA.

[LynneJ Vasculitis UK Volunteer]

Forgot to add I am also on azathioprine as this is to help the Rituximab last longer.

[philtw]

Hi,

I have had GPA since 2013 and had rituximab x3,.......I have always been given rituximab to reduce my steroid intake and sometimes successfully, however last year my Rheumatologist (Qatar) tried to get me down to 6mgs after Rituximab and I relapsed it took me 9 months to get back under control and steroids going back to 20mgs. This was mainly because I moved to Spain in June 2016 and had to find a new Rheumatologist and she wasn’t versed in the condition.

I am currently undergoing my 4th time of having rituximab to reduce steroids down from 17.5mgs, since if I go lower I start to get symptoms back.

I am also taking 150mgs of Imuran (Azathioprine)

[Jackie1406]

I had the initial doses 2 weeks apart & waiting to go for my 3rd maintenance in July. I have to say that I have found it to help me greatly. I have managed to get to 2mg of prednisolone & last Monday went down to 1mg, this has left me more fatigued, but nothing compared to the relapse I had last year.

I find it very beneficial . 😀🌺

[gibson100]

I have had MPA for almost seven years now.

DUring that time I have had tree flares or relapses.The most recent was in December /January this year.

I had my last Rituximab treatment in February after which I felt soooo much betteralmost right away.For me Ritiximab has been a kind of magic potion.

STrangely I had a call from my consultant at the Royal Free on Friday saying that they would like to put me on a a six monthly maintenance infusion course for the next couple of years.

I was quite surprised knowing how expensive it can be although cost has never been mentioned at any time during my treatment thanks to the miraculous NHS.

PErhaps it is less expensive to prescribe a maintenance dosage of Rituximab than it is to firefight flare ups and relapses when they occur.

Does anybody on a similar programme know if the dosage given every six months is the same as that for one off treatment?I would be interested to know although I will of course ask my consultant prior to my next infusion in September.

[2534 in reply to gibson100]

Hi there. Yes I have six monthly maintenance RTX. I had one double infusion with each infusion two weeks apart, and now have a single infusion every six weeks. RTX hasn't had the magic effect you are describing so I would be interested to know what dose/frequency you had at the beginning?

[Chappell8 in reply to gibson100]

Hi Gibson10. Who is your Consultant? I've had excellent care from Prof S. at Royal Free. I was diagnosed with limited GPA 2.5 years ago. I had 2 induction infusions of 1g Rituximab, 2 weeks apart. Maintenance 2 infusions of 1g at one year. Then 12 months later I had my latest single 1g infusion. This has worked well for me and symptoms are much improved. I'd like to request another 1g maintenance dose after 6 months, rather than 2g every 12 months, as my last biopsy showed active inflammation had returned by 9 months. I'm interested to hear that your Consultant at Royal Free is recommending a 6 monthly plan.

[Wageners]

Same here,on 6 monthly rituximab, just received letter to say at next dose I will be given Rixathon which is cheaper for the NHS.