Last reply 3 weeks ago
Ocrevus advice

Hi All,

I will be having my first infusion soon of Ocrevus and ive been told about the before and during treatment but I am looking for any personal stories about the after bit. I wondered how people felt after their infusions, did you recover well or did it take some time? Did you have any side effects? Just trying to pre empt any possible problems and get a plan of action in place.

Thank you, Helen

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stumbler
1 month ago

Hi @helen_hough and welcome.

Selecting the “Ocrevus” tag, that has been automatically added to the foot of your post, will access previous conversations/experiences on this treatment.


helen_hough
1 month ago

Thanks stumbler…… was having a nosy round the site and noticed the tags that had been added to other users posts so ive been able to get some great information 🙂 Thanks again as all new to this so all help is appreciated


mlgilber1
1 month ago

I started in September and after my two half doses I got a bit worse for a little over a month. Then, I was feeling great and a lot of my original MS symptoms disappeared or lessened. I went from needing a walker to not needing it. I’m part of an Ocrevus page on Facebook and everyone is so different. For some it takes about a month to recover and some don’t feel different at all. This has just been my personal experience so far. I’m still grateful I chose it since it’s made me feel so much better. Good luck.


nell
1 month ago

Hi @helen_hough
I am due to have my first infusion on 25 Feb and was about to post exactly what you’ve asked so look forward to reading any responses to your post. I am particularly wondering how long I might expect to be off work, if at all! If my first infusion is before you I will let you know how it goes for me


dominics
1 month ago

I started Ocrelizumab on Jan 9th with the first of the two infusions.

I had the sum total of zero reaction during, immediately after and to date! Absolutely nothing. I have to say that I expected something, anything.

We’re all different so it is no guarantee. The broader remarks from research indicate that it is very well tolerated. It is extremely unlikely you’ll have anything.

This is no guarantee, and you may be the rare one. But is highly unlikely.

If you are driven to the hospital it is more likely that that will be the highest risk activity of your day 😉

Really.

Best of luck,

Dominic


helen_hough
4 weeks ago

Hi @dominics, my mother is driving me there so yes that will be the biggest risk!
Fingers crossed all will be well, trying not to look at the long list of side effects etc and just going with it 🙂

@nell I hope it all goes well for you 🙂 looks like I won’t be in until March so you will beat me to it! Good luck and let me know how you get on xxx


dominics
4 weeks ago

Wear your seat belt and mind how you go!


evinmi
3 weeks ago

I just had my fourth infusion of Ocrevus I have had absolutely no side effects. I can’t say that I feel much better but I certainly don’t feel any worse. I have heard some amazing stories though of people who have had amazing results. I hope that you are one of them! ☺️


nell
3 weeks ago

Hi @helen_hough thought I’d send an update post my infusion on Monday. Was all very straightforward- had no infusion reactions and was all done in 6 hours. So far I feel fine and as normal. Took Tuesday off work as was expecting to maybe feel at least a bit ‘peaky’ but nothing. Did everything as normal today – work/lunchtime swim/home stuff! Have been drinking loads of water to keep any headaches at bay but otherwise all as normal. Next infusion 11 March –


helen_hough
3 weeks ago

@nell I am so chuffed for you that it all went good! Fingers crossed you continue to do well 🙂 Don’t think my first one will be done until the end of March so you would have had your second one by then, hopefully it will go as well as the first one did xxx
@evinmi thank you for your encouragement 🙂 hopefully over time it may make you feel slightly better. It’s hard isn’t it because we all want a miracle cure but sadly it’s not always so apparent 🙁
@dominics the only way I can mind how I go is by getting a taxi! Now that sounds like a plan lol 🙂


smack
3 weeks ago

There is no cure for MS. The idea of feeling better is that maybe one’s body is less susceptible to the ongoing attacks.Not a doctor or researcher but it is my understanding that Ocrevus blocks the B cell activity where all other therapies go after T cells. After using three other therapies with shots and Tysabri my nuero retired. MS has been a long journey. New.nuero said that my MS was inactive just exercise to regain function.He retired. Latest nuero orderd MRIs that showed lesions active on spine. Chose Ocrevus because a different path. 2nd infusion in dec. Next infusion in June. No real change.


dominics
3 weeks ago

Thrilled for you.


gemski1
3 weeks ago

Hi,
I had my first two half infusions at the end of 2018, no infusion reactions but did feel wiped out for a few days after each one. This seems to very individual, from what I’ve read on various forums some people feel no effects at all.
I’m feeling pretty good now but it definitely lowered my immunity, had 3 very heavy colds back to back during Dec, Jan, beginning of Feb. These seemed harder to shake than normal but the time of year probably didn’t help as lots of bugs about.
All the best


shocked
3 weeks ago

Can I ask how many of you that are taking Ocrevus have PPMS? Recnetly diagnosed and researching.


marlon_dagg
3 weeks ago

Have had my first two half doses and had no adverse reactions. Can’t say o feel any better yet but I don’t feel any worse 🤙🏻

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