@cazsmith

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cazsmith

First dose Ocrevus experience

Just posting my experience of my first half doses of Ocrevus, as I found reading other people’s experience really helpful when I was deciding treatment! The infusions went smoothly! Once the cannula is in, you have a dose of steroids and antihistamines which can make you feel sleepy. The Ocrevus infusion itself takes approx 2.5 hours overall- it’s a good opportunity to watch a film/nap/chill. Your blood pressure, heart rate, and temperature are checked every half an hour and if they’re all OK, the infusion rate is increased by 30mls/hour each time. The only reaction I had was a rash on my face and neck towards the end of the infusion, so the nurse slowed down the infusion and it cleared up quickly. After my first infusion, all my old symptoms (numbness/tingling/heavy legs/weakness) came back in full force. I panicked and thought I was relapsing, but was reassured they were most likely just residual symptoms. This lasted for about 4 weeks before they improved massively. I had to remind myself that Ocrevus doesn’t treat symptoms - it’s more for long-term prevention of future relapses. I also developed a sore throat and heavy cold the night of my second infusion, which cleared up itself after a week. A month post-infusion and I’m feeling the best I’ve felt in a while! Last month I was dragging myself up the stairs and now I’m able to go for runs. I understand that everyones experience is personal but I’m feeling very positive about Ocrevus so far and love the fact it is 6 monthly! I’m more than happy to answer any questions. I’m so grateful for the lovely people on here who were able to answer my questions when I needed help :)

Laura_Price

@Laura_Price

I am glad to hear that everything went well. I start my first infusion on the 21st

cazsmith

@cazsmith

@laura_price aw hope it goes well for you! message me if you have any questions at all

Mlgilber1

@Mlgilber1

My symptoms, especially the tingling, came back full force after the two half doses as well, but went away after a month. Thankfully, that hasn’t happened after my full doses. My infusions seem to last between 7 and 9 hours total due to reactions, but they’ve been minor. I’ve been on a little over a year and my MRIs have no new lesions or active ones. I’m glad yours went well!

ClarePilling

@ClarePilling

I’ve just had my second dose of Ocrevus and feeling very weak in my legs and the tingling/ hugging sensations etc has come back in full force with having to drag my legs up stairs 🙄 so your post has made me more optimistic and hoping the symptoms subside like yours 👍thanks for sharing 😀

ItsMewithMS

@ItsMewithMS

Thanks for posting. Just had a message today that insurance approval is now done and I am to call tomorrow to discuss scheduling the first infusion. I will see what they have open and see if I have time to get my fall flu shot first or wait until a couple of weeks after infusion from the advice I've heard. Thanks for sharing your stories-

Lilian

@Lilian

@cazsmith Thank you for posting this, my 16 year old daughter is starting this in two weeks, I’ve done lots of research but it’s good to hear from people who are already on it and save me from panicking. I am aware that everyone is different and that she is the first child that GOSH is giving this treatment too but I’m very hopeful. x

emnuss

@emnuss

Thank you so much for sharing this! I have my first dose tomorrow and have been very anxious and nervous about it. I'm so glad that you are feeling better and finding relief.

ZoeC

@ZoeC

Thank you for sharing as I have experienced the exact same today. Very first fusion went fine. Just have niggle in my head regarding the scarier side effects but of need to stay positive!

ItsMewithMS

@ItsMewithMS

@laura_price Just approved and scheduled for the 23rd. Just gave me time to get the flu shot today to be "at least two weeks before"...whew...we'll have to compare notes ;-0 I'm coming off Rebif and was on Copaxone before. Diagnosed 15 years ago...

Laura_Price

@Laura_Price

That’s great. I’ll have two days on you... I am confident that this will be a great experience for both of us. I have no reason to think otherwise. My first is on the 21st. Scheduled 9:00am I am trying to keep busy and not drive myself crazy thinking about it. It can be overwhelming. Stay confident and everything will be absolutely fine. - fingers crossed. I’ll keep you posted.

cazsmith

@cazsmith

@mgilber1 aw i'm so happy for you that your MRI scans have shown stability! Also reassuring to hear that your symptoms didn't come back after full doses as I was worried it might be worse, hope you're doing well :)

cazsmith

@cazsmith

@clarepilling oh that does sound extremely similar to what I experienced, I hope the symptoms subside asap i'm sure you'll be back on top form soon, look after yourself :)

cazsmith

@cazsmith

@itsmewithms that's great news! Hope all goes smoothly for you x

cazsmith

@cazsmith

@lilian I totally agree, its so easy to scare yourself reading things online, it's reassuring reading peoples honest experiences on here rather than lists of potential side effects! I wish your daughter all the best for her infusion i'm sure she'll be very well looked after, especially as she's the first child in GOSH receiving Ocrevus! Thinking of you both!! :)

cazsmith

@cazsmith

@em-nuss hey! how did your first infusion go? hope you're resting well x

cazsmith

@cazsmith

@zoec no worries at all, I'm so glad your first infusion went well. stay positive and all the best for your second xx

Lilian

@Lilian

@cazsmith Thank you. She has the first half of infusion tomorrow morning, we are both feeling anxious. My daughter thinks she’s going to lose her hair despite my reassuring her she won’t as that is not a side effect I have seen listed. Love and light to you all. X