I’ve been given my treatments and opted for Ocrevus. I’m due to have the first one right near when I go to London as my daughter’s got into the semi finals for BGT. I’m scared If I was to have It, it would make me worse. Has anyone else had it? Did you get any side effects?
Hi, why not ask for a later appointment, just incase?
Congrats to your daughter. Enjoy!
I’ve recently changed to Ocrevus; my first dose was split into two and 1st infusion was on 16.02.23 and the 2nd infusion on 02.04.23 and I had absolutely no side effects (yeahy!)
The only issue I has was my 1st infusion should have been on 02.02.23 but on the day of the infusion the infusion nurse asked me to provide a urine sample that unfortunately indicated a UTI so the infusion couldn’t go ahead (sleepless night for nothingwhich was a PITA).
Had to take antibiotics and 1st infusion rescheduled 16.02.23, as I didn’t want any issues I got my surgery to check a sample and once again I had another UTI but as long as I was on antibiotics then the infusion could go ahead.
Two weeks later and prior to my 2nd infusion I got my surgry to check another provide sample and once again I had another UTI so once again back on the antibiotics and 2nd infusion happend.
What I will do going foward and prior to furture infusions is to make sure I provide samples to my surgery to check for UTI’s and provide antibiotics that way infusions can take place.
What the infusion nurse along with my neurologist told me was on the day of each infusion and prior to the Ocrevus infusions I would need steriod infusions and I would need to isolate for 2 weeks following each infusion ~ if thats the same for you then factor that into your thinking and why not look into delaying infusions like PBMS said.
Good luck to your daughter and BGT
Oh no, that’s so frustrating! My doctor had told me that a UTI is much more common when you have MS. My nurse has mentioned the steroids and I need to stay there all day. Still trying to get my head around it all.
Aww thank you. I managed to change it as didn’t want to have a side effect when I’m there.
I managed to rearrange it for another day. Aww thank you very much.
For both of my infusions I had to be at the hospital for 9am and had to stay there for 1hr once the infusions were finished as a “just in case” and on both times I was ready to leave by 13.30pm.
After the 2nd infusion we set the date to the next infusion taking into account holidays (their’s and mine)
What did I take with me:
1: Ipad with downloaded netflix & headphones
2: 2x hot drinks, 1x cold drink
4: sweets (brave people deserve a treat don’t they? lol!)
To help with the UTI’s and following a conversation with infusion nurse I now take d-mannose capsules each day as it would appear I don’t empty my bladder fully (thanx ms) so UTI’S is par for the course.
I’m pretty sure that everyone who starts MS meds has to get their head around things, I know when I was due to start my 1st medication (3 per week injections) and my 1st infusion I had a few sleepless nights but I honestly think thats normal. What I can tell you is once youve had your 1st infusion all those Q’s going around in your head will significantly lower or go away all together.
Its good you’ve manged to change your infusion date and means you can go along to support your daughter @ BGT ~ turn it into an occasion to celebrate!
That’s good then as nurse told me it would be around 3pm.
That’s brill, I’ll make sure I pack lots of bits like you did I know I’ll get bored.
I am scared and stupidly reading up on things all the time.
I’m so pleased I managed to get the date changed as I didn’t want it to Impact my daughter. I think there will be lots of celebrations as it’s something she’s never going to forget, neither are we.
Thank you for all your help I really do appreciate It!
Prior to my 1st infusion I was also somewhat sacared and apprehensive and I think thats normal and like you I came into this forum and went though all the Ocrevus messages and that did make things a little concerning in my head.
Once I’d had the 1st infusion and it went without any issuss things in my head calmed down to the point of not being a ‘stress head’ and I didn’t have a sleepless night.
During the 1s infusion the infusion nurse made regualr 30min checks which I found helpful with things going on in my head.
Now you’ve managed to change your date how long have you got to wait?
I’ve done nothing but do research on Ocrevus. The nurse told me to join groups on Facebook, wish I hadn’t now. I’m sure if everything goes ok then I’ll be fine for the next dose.
Yeah I managed to change it for 4 weeks later. I just can’t have it giving me sauce effects when what’s she’s going to be doing is once n a lifetime. Hope you’re well.
II looked at treatments on this website, on this forum wrote lots of Q’s which I then asked my neuro and also spoke to good friend that has a medical background and left it there ~ I’ll admit I am control freak but for sanity reasons I didn’t go ott with my research on the basis that google isn’t always your friend.
I’m sure you’ll have your 1st infusion and find some of the Q’s going around in your head will have gone; you’ll have to let me know.
I definitely know Google is not my friend as it does scare you. I’m constantly messaging my daughter whose in her 3rd year of studying medicine. She must be tired of all the questions I throw at her.
I’ve got another UTI, I feel bloated as anything.
I just want it out of the way now. I’ll definitely let you know how it goes