Rituximab infusion tomorrow !!

[poppies_are_red]

Hello, this is a little last minute. But I have my first rituximab infusion tomorrow, I was wondering if anyone had any tips logistics-wise. Also, do they expect you to lie still for 6 hours and can you go to the bathroom? I figured I'd bring lunch, a jacket, a book, or a sketchbook and listen to music. Any suggestions would be very helpful. Thank you !!

[vitalspark]

The whole process is quite comfortable your movement is restricted a little because you are attached to the infusion pump but it’s on a stand which is on wheels so toilet is quite easy. As long as they get the cannula in easily the whole process is pretty relaxed, they start with a steroid infusion, makes sleeping on the night a bit difficult, after the steroid they start the rituximab very slowly and as long as you’re comfortable they increase it in stages until dose is complete. If you are having any problems they will stop or slow it all down and monitor you, throughout the whole process they monitor your pulse and blood pressure and will stop or slow things down if you are having any problems.

I hope that this goes well for you, it helped me for the three years I was receiving these infusions.

[poppies_are_red in reply to vitalspark]

Ok that's good to know. Thank you !!

[CarolMcl]

Hi. You will be given paracetamol and steroid IV before the rituximab infusion to hopefully alleviate any side effects. The first transfusion will be given at a slow pace to ensure you tolerate it and again to prevent side effects. You won't be lying down and your free to use the toilet by carefully taking the transfusion with you. It's all very relaxed and as you've indicated a good idea to take a book or maybe a movie downloaded on a tablet etc. For me the only side effect I had was that I couldn't sleep on the night I received the transfusion, no doubt due to the steroids given at the beginning. If your feeling off in anyway during the treatment, say to the staff and it'll probably be slowed down. You will regularly be monitored, BP etc throughout the treatment. I hope this helps 🌹

Sorry, my post is basically repeating what you've been told, reply must've came in whilst I was typing

[poppies_are_red in reply to CarolMcl]

Thanks for your reply, yes it does help. I feel more at ease now

[Jerg in reply to poppies_are_red]

I will be starting in July so these responses are very good thank you all

[Finn523]

Drink water ahead of time it is said. I get Rituximub infusions every 6 to 8 months. I’ve not noticed any side effects thankfully. I’ve always been sitting up when I get my infusions. I usually take a cereal bar and my mug of ice water. I just play games on my cell phone.

Best wishes to you. 🙏🏼 The infusions help a lot!

[Lizard28]

I’d also wear clothes that are easy to adjust when you go to the toilet, you only have one hand as you will wheel the infusion with you. Best wishes

[weathervane]

I hope all goes well for you tomorrow 🤗

At my infusion centre, the chairs are recliners so you can snooze in between bp checks. You get a cup of tea and a biscuit mid morning and afternoon and soup and a sandwich for lunch. Some people bring their own as selection is limited and maybe doesn’t suit their diet.

I find im always very tired for a couple of days afterwards so best not to have anything planned.

[Mystik]

yes I have first one u might get side effects everyone is different ask questions when u go but I have found it helpful

[mainlyconfused]

I’ve been having Rituximab infusions for a few years now. They have recently started to use a syringe to put the steroids through the iv , as it’s much quicker. Definitely take something to drink and headphones I have mine at the RNHRD in Bath and the unit is calm and quiet. Loud conversations and noisy games or videos are discouraged.

I am usually a little bonkers (according to my children) the day after, but this is the steroids.

Hope it goes well.

[Babsy2]

I took my IPad, so that I could read my downloaded books. The nursing staff were superb. Got tea/coffee and lite lunch. Had a slight reaction to the infusion towards the end, but staff dealt with it very quickly. You will be advised of that when you are in the ward.

[Diagnosis_Collector]

I used to nurse on an infusion ward and just to add onto other advice- make sure you drink plenty the day before so you are well hydrated and keep warm before the infusion. It will make the cannulation process easier. If you are prone to fainting during blood tests etc tell your nurse so they can put things in place to manage any potential fainting. It's can be a boring long day so bring stuff to keep you busy, just be mindful that one hand/arm will be restricted in use from the cannula and there isn't huge amount of space to store your things. Normally a book and/or iPad with some films downloaded will be sufficient. (Remember headphones!) Most people generally appreciate the forced relaxation/time to switch off, but this will depend on your personality and normal home life.

[kali9]

Hi poppies_are-red, hope your rituximab infusion go well. Please let us know how well the medicine is working for you!May ask how did you get offered rituximab and what are your symptoms? I have SLE and Raynaud's. I take metotraxate, nifadepine and currently prednisone but still experience a lot of pain. I would also appreciate to hear from anyone who has been on rituximab or another biologial medicine for lupus and gone in remission. Thank you!

[poppies_are_red in reply to kali9]

Hi kali9, thanks for your message. The infusion itself went smoothly, not sure about effects but I felt generally well before the infusion. So the real test will be when I come off prednisolone. I got offered it by my consultant because the hydroxychloroquine and methotrexate weren't working and I was given a high dose of prednisolone to control the painful symptoms. I then gradually came down on prednisolone, but it flared up again. I think it has something to do with the disease level which the doctor can see from your blood test. It's the one that's anything above 5 is bad, and mine was way above 5. The rituximab would also help a different condition I have, so I think that's why. Or that's how I interpreted it, each case is different maybe best ask your consultant next time you see them?

[poppies_are_red in reply to kali9]

For symptoms they've been ok since I'm on steroids, but from before they've ranged from stiff fingers to swollen feet, or painful wrists to complete day to day activities or stiff jaw that made it difficult to eat.

[MaryannM]

Good Morning Poppies are red

I have had Rituximab 4 times it’s very comfortable process if you get a bed I found on my first one I needed to lay down after a while as I felt strange, you should be check every 30 minutes and as long as you are doing ok they Will slightly increase the rate of the infusion

I hope this works for you I’ve just found out the my Rituximab is no longer working for me and have now have to try another kind of infusion called Belimumab.

Take book crossword if you have an iPad or device to watch a film on do that.

People are really lovely and also you get to talk to other people in the same or similar situations as yourself

Good luck today I hope it goes well.

[poppies_are_red in reply to MaryannM]

Thanks for your kind wishes 🙏🏻

[kali9]

HI poppie_are_red, Thank you for your reply. Hope you are doing well and Rituximab is working for you. I also get painful feet and swelling on the balls of my feet, wrist pain, finger pain and other symptoms. I get monthly blood tests and I am told my blood tests are not bad. I know they test for ESR and CRP but dont know what else is included. What I dont understand if my blood tests are not bad why I have pain and swelling on my feet. Anyway I hope Rituximab gives you pain relief and if you can give us an update if it is working for you.