Advice for 1st Rituximab?

[mhlmom]

Hi all

After having allergic reactions to the first 2 biologics they tried, I’m having my first Rituximab infusion on Monday. I really want this to go well so is there anything I should do/take/expect? Any advice at all would be gratefully received. The rheumatologist has instructed that it be done really slowly -minimum 6 hours - to try to avoid another reaction and I know that they are giving me steroid, antihistamines and paracetamol before they start.

[trenarren]

Hi, I had Rituximab last July, 2 x 6 hour infusions over 2 weeks. The infusion process was boring, take a book/tablet with you, but I had no real problems.

I had been on Cimzia fortnightly injections which seemed to have lost their edge.

I have found since the Rituximab infusion, a very slow start to any improvement of my flares but the last couple of months it's not been too bad. However, I am just starting to get my wrist, shoulder & knees showing the first signs of fare!

I believe the second Rituximab course is possibly more effective, with infusions every 6/ 9 months. I am due a Rumatology appointment on Thursday, so I will hopefully be updated then.

This is my experience with Rituximab, I hope it is of some use.

I hope it goes well for you, and would love to hear how you get on.

Mike

[mhlmom in reply to trenarren]

Thanks Mike

[AgedCrone in reply to mhlmom]

At this time of year do you take a warm jumper or a throw as sitting still for six ++hours you can get really chilly – they have to keep the unit quite cool .....all the equipment needs to be kept at a certain temperature.

My first infusion lasted 7.5 hrs.....but every one has a different tolerance. I’m now down to 6 hrs.The Biologics nurses are really experienced and they know exactly how fast or slow they need to take it.

Don’t panic if you feel a bit dizzy or get itchy. That is quite common, & that was why my first infusion took so long. Tell the nurse straight away....she will slow down the infusion ..........wait a few minutes, then start up again a bit slower. That only happened the first time.

My unit offer cold drinks, tea & biscuits Am/Pm, then sandwiches & soup at lunch time in the winter.....the soup is so-so...the sandwiches .....forget it. I usually take some cheese squares & an apple.....or any other snacks you fancy......it passes the time. I’d take something to nibble in case your unit don’t feed you!

As Mike says take a tablet/book/Kindle.......as once you get over the initial set up .....it does get boring - but the antihistamine leaves most people quite sleepy.....but you can’t get a good sleep ....especially as on a first infusion they often do TPRs every fifteen minutes for the first couple of hours....then every half hour.

I always have a book I’m anxious to read on my Kindle and I never get even 1/4 through it!

I found it took until the second duo of infusions before I felt the full benefit ...been on it since 2016....still trying to last longer than 6 months between infusions. Off to have one next week.......having tried to go until March...but just couldn’t make it!

Do let us know how you get on....don’t get downhearted if you aren’t running marathons the next day....as I said...took me 6 months to get the full benefit...but it was really worth the wait.......I waited 17 years to get Rtx......really wish it had been available when I was first diagnosed.,

Good Luck on Monday!

[mhlmom in reply to AgedCrone]

Great advice! Thank you 😊

[Lolabridge]

Excellent advice from the others who have already posted replies. The nurses who administer the infusions are highly trained and will monitor you closely so you will be well looked after.

I also found that there were positive effects from Rituximab about 12 weeks after the very first infusion I had (May) and more after about 20 weeks. I had my second cycle of two infusions in November and soon found even greater improvements. I’ve now hardly any pain and am much more mobile.

I take my own packed lunch in with me, a Kindle or iPad, the newspaper and a wrap/shawl as I do find I get cold.

Hope all goes well for you on Monday and that you see improvements soon.

[mhlmom in reply to Lolabridge]

Thank you. That sounds very positive. I had been warned not to expect an instant remission but even the prospect of feeling better by the end of the year sounds good right now.

[Pulfs in reply to mhlmom]

I been on retuximab for last 7yrs ,infusion every 6mths. I always ask for it to be put through slowly and always take my own packed lunch. Try to drink lots of water when there, I usually get through 2 jugs. This helps to keep you hydrated. Got my next review in May to arrange next infusions. This has been the best treatment for me to keep me mobile and pain free. Was diagnosed 25yrs ago and wish this had been around then.

Hope every goes well xx

[GranAmie]

Don't think I can add to the great advice you've been given! Bedsocks maybe in case yr feet get chilly? I had my first 2 lots of RTX/truxima summer 2018, then again last year... seem to last almost a year each time and haven't looked back, so try to relax and spoil yrself - you're worth it :). Best of luck. xx

[mhlmom]

First infusion just completed in 6 hours with no issues. Took a throw, lots of juice and plenty to do. Actually had quite a nice day 😊 thanks all for your advice and encouragement x

[Lolabridge in reply to mhlmom]

So pleased you had a good experience at your first infusion and hope you see some benefit before too long.