I am due to start Rituximab soon, infusion t... - Vasculitis UK
I am due to start Rituximab soon, infusion to be given over 4.25 hours, not 6, as I've seen on this site. Is this an important difference?
There's a fixed protocol for the administration of the drug whereby the dosing rate is increased incrementally over the period. This is to endure the risk of toxic shock / negative reaction is minimised. Typically the procedure takes around 5 or 6 hours including a pre-goes of saline and antihistamine and a further saline flush after the Rituximab has been given. The actual Rituximsb dose is based on body surface area but is typically 1 gramme. Be aware it can take a couple of months to feel physically different after receiving the drug. I hope your hospital uses the Addenbrookes protocol of 5 doses over 2 years (one every 6 months) as this appears the most effective regime to date. Healthy wishes. Martin
As I understand it, there is no fixed time for a rituximab infusion....it depends on your reactions as you are given it. Most problems arise during the infusion rather than after it, so your blood pressure, pulse rate etc will be monitored closely, and the speed of the infusion is dictated by them. My first infusion took more than seven hours, as my blood pressure dropped every time they tried to increase the rate. My second took about four and a half hours, including the saline, antihistamine and extra steroid - i was told that this was not unusual. Take a good book, and/or some music or podcasts! The antihistamine makes you sleepy, so it won't feel as long as you think it will. Do hope it goes well.
Hi, my experence of the rituximab drip:
I had my very first Rituximab infusion, for refractory Churg strauss Syndrome, this Monday (20th May). I arrived at hospital: Derriford, Plymouth at 9.00 pm. My wife dropped me off at hospital so I wasn't stuck with the car there in case of feeling too unwell to drive.
I met up with the consultant at about 10.00, we had a chat about the possible side effects and he explained the procedure. I had to sign a consent form due to Rituximab not being normally prescribable for vasculitides like mine (ANCA negative Churg Strauss syndrome) (I think they call it 'off label') but Devon and Cornwall health authority had OK'd this use back in 2012 I think, so I was at last able to have it as nothing else except steroids at 30 - 45 mg per day has worked for the last 6 years.
Lots of sitting around ensued, the hospital pharmacy have to batch it up on the day of use, and they won't do that till you've signed the form...
Soon after lunch (vile white bread & corned beef sarnies, should've brought my own packup!!) I got the first infusion - about 30 minutes to put in 100 mg of methylpred - a sort of pre-emptive strike against any adverse reactions. Or maybe to help me get over the lunch. Next, a shot of Piriton antihistamine - to stop hives etc flaring up. A couple of paracetomols to swallow (this stuff can give a headache) and I was ready to get started on the real thing. The infusion nurse attached the drip and started it at 25 ml per hour. That would have meant 20 hours to get through the 500 ml bag of solution, but they check your blood pressure, temperature, sats every half-hour and if all is well they increase the drip rate by another 25 ml / hour. So instead of taking 20 hours it probably took about 6 hours at most - the drip machine beeped it's 'finished' tone at 7.30 in the evening. I had to wait around for another hour to be observed for any adverse effects - blood pressure etc checked again a couple more times - and I was OK to go home. Celebrated by eating the best tasting fish and chips whilst sitting on Plymouth Hoe before heading back to Cornwall.
Side effects so far: mild headache Monday evening and Tuesday morning. I normally feel woozy by midday (nerve damage in feet means my eyes doing the balancing, I have to lie down to reset my brain after a bit..) and Tuesday was perhaps a bit worse. But Wednesday was OK, today Thursday was OK. I think I might even be feeling a little better than when I went in, perhaps at long last this is letting go it's grip on me. I could breathe a bit easier walking up the slope by my house than I could last week. I know it's not expected to work this quick so maybe it's wishful thinking - but we'll see.
Next infusion is on Tuesday 4th June - you have the treatment in two halves and I understand this may go a little quicker now they know I don't have a bad reaction to it. If you are being told 4.25 hours, that sounds like that's maybe the maximum speed they could do it at IF they can turn up the wick every half hour. I tried to do the maths for my infusion rate on Monday -to see when I might escape from hospital by- but it made my brain hurt and I worked it out an hour too fast. I had the Addenbrookes protocol I think - start slow with the drip - v important just in case you get what's called an 'infusion reaction'. As Bronte explains much more succinctly in the previous post.
All the staff at Derriford PIU: lovely caring careful people. Thanks guys!
Hope this helps and makes you can be confident about your infusion. Oh yes, take Bronte's advice regarding stuff to read. I had a read and snoozed (fave 'activity') some of the time during the infusion. It's a looooooong day! I won't tell you about the dinner...
Rob.
I just worked it out with a spreadsheet, yes 4.25 hours will do it, so what they are telling you is right if all goes well and they can speed it up every 30 minutes.
Here is the amount left after time zero, then every half hour, then the last few minutes. They won't make the drip go faster than 200 ml per hour.
time 0 500 amount left
time 30 487.5 amount left
time 60 462.5 amount left
time 90 425 amount left
time 120 375 amount left
time 150 312.5 amount left
time 180 237.5 amount left
time 210 150 amount left
time 240 50 amount left
time 255 0 amount left
4.25 hours total time to finish
Good luck
Rob
I've had 2 infusions of rituxamab second one 2weeks after the first . I was absolutely fine with it , the second time was much quicker . Do take plenty to read , I took my iPad with me
I had a rituxamab infusion in August Last year . And was supposed to get the next march this year . I emailed the rheumatologist about this as some times I get missed of there mailing list . I was told not getting till possible end June or July . When I got my first I was told next would be 6months. Why do they just change dates . Could this be again down to post codes or lack of funds . .?
My son had his first doses a few months ago now. 1st was postponed due to his adverse reaction. The two doses were then given over a 47 hour period each time to prevent the reaction although it still made him feel a bit cold
He has been adviced that he will get follow up dose (post 6 month) ans despite original concerns re funding changes in April consultant thinks it may de easier with new funding as he ticks more boxes
Many thanks to all for answering my question - I knew I could rely on this site for comprehensive help! Thank you tintinrob too for very detailed account; I have the same diagnosis as you, and am in the south west as well (Taunton), but sometimes think I am the only patient they have with this diagnosis - it's nice to know there are others not too far away. I am getting increasingly nervous as the date comes nearer, so thank you all for your reassurance and I hope everything continues to go well with you.
I have had Rituximab every 6 month since 2007 and I am feeling so much better. In the beginning I had to stay in the hosbital for two days now it takes a couple of hours. But you dont get better at once it can take months before one notice any diffrens.
Thanks for this Madicken. The more positive feedback I get about RTX, the better I feel about it. It's all just a bit scary, especially if you read all the stuff they give you! Hope everything continues to go well for you.
