Hi I’m new here, first ‘post’. Firstly I was diagnosed with RRMS in 2013. My condition has worsened considerably over the last 18months or so, and my first question is do you feel ‘supported’ by your MS Team? I feel very much alone and left to ‘get on with it’! The main question I wanted to ask was I am having my second dose of Ocrevus on Tuesday, my first main one -6 hours I’m told. How do people cope with bladder issues when hooked up to a drip! My first infusion was given over two 3 hour sessions and that was bad enough. My bladder is awful, urgency, lack of control, frequency etc and I found myself asking to be ‘unhooked’ from the drip very often which seemed to infuriate the infusion nurses! Any suggestions/advice would be greatly appreciated I getting myself in quite a state worrying about it!
You just need to tell them about your bladder. Being MS Nurses, they are used to dodgy bladders! I’ve also got severe wee urgency and had the two 1/2 doses recently. I was walking backwards & forwards to the loo, hooked up to the drip on a trolley. I asked for a chair near the door and line of sight to the loo. The second time I asked if there was a spare private room not being used - with ensuite. Needs must!
Thank you for your reply GCCK, it reassures me that I’m not the only one with issues at infusions, even though the nurses made me feel like I was being a right pain and was the only person out of the hundreds that gave them these ‘problems’! I am going to ask if I can be nearer the toilet
Hi Sammie1, I’ve just had my first full dose of ocrevus too. It should never be a problem how many times you need to go to the toilet! Maybe make them aware that it would be easier for you to be closer to the toilet’s because you like a lot of us need to go and as quickly as possible. Take care Angie❤️
I would also unplug the drip machine/trolley so you can go to the toilet as and when you need to. That’s what I did last time, it won’t be a worry for you then
Thank you Angie, I’ve had the infusion, bit stressful but actual infusion was fine, had a faster dose, 4 hours, so apart from trips to toilet and a dislodged needle all went ok. As suggested I asked to be near toilet and luckily it was very quiet so had time to chat to infusion nurse and stress my bladder issues. In six months at my next one I won’t be so stressed.
Did they show you what to do when you unplugged, which buttons to press to stop the bleeping and which ones to press when you plugged back in? Were they happy for you to do it? They didn’t give me the option (I didn’t ask though) I had to tell them when I needed to use the toilet and they’d come and ‘unplug’ me!
I actually saw the lady near me do it and wondered how she did it. Watched where the nurse unplugged me when I needed to go to the toilet and just did it myself after that. It wasn’t bleeping, maybe when you go back for your next one ask the nurse to show you. Angie❤️
Ju8st to add that besides the mains power lead, those electronic flow meters contain a battery. Although they can function for quite a while on just battery power, the beeping noise when you disconnect is the warning that you’ve disconnected the mains power lead. One of the buttons on the unit will suppress the alarm. There will certainly be enough charge in the battery for it to run on battery power while you get to the loo and back.
Thank you both for your replies, much appreciated, nice to get other people’s experiences