@Sarah_Walton

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Sarah_Walton

Ocrelizumab (Ocrevus)

I’m just wondering how peoples experiences have been on Ocrevus? I’ve been diagnosed with RRMS since 2015 & for just over the past year been on Copaxone injections due to relapses. Had a recent brain & spine MRI following 2 relapses during the last year & my consultant now wants me to move onto an infusion. I’m hopefully at the end of my second relapse which has lasted about 7 weeks. I’m nervous about moving to an infusion & generally down to hear my MS has progressed. I’m 29 & feel like it’s progressed quicker than i thought over the past 2 years. I hate how we have no control over MS!!

ItsMewithMS

@ItsMewithMS

I was Dx in 2005 and initially on Copaxone because that was about all there was. I continued to have an attack every couple of years and continued progression. Maybe it helped some. It helps in about 30% of cases for all the pain and damage it did to my injection sites, etc. I was moved to rebif and never really got over the flu like feeling but no relapses and then on to Ocrevus when my Dr trusted it as it had enough time on the market. No progression since then it seems or at least slowed and I have moved to a SPMS classification. I didn't realize how much I dreaded "injection night" until I no longer had to do it and by contrast I look forward to the twice a year "infusion day" where I hang out at the infusion center with snacks and my laptop and give myself permission to have snacks and doodle on my laptop instead of work and know I don't need to think about treating my MS for another 6 months! As far as effectiveness of the two and the other options hit the Dr Boster You Tube site and put in "Role for Copaxone" and "Most efffective" as search request in the treatment group. He has review about just about every options and comparisons for effectiveness, how they each work, etc. There is also an Ocrevus FB group people post into with questions, comments and the obligatory photo of actually getting your infusion. You'll be in good company and in good care-

topup

@topup

Hi I am sorry to say I am not on Ocrevus but I will say don't be afraid to speak up to the NHS staff treating you. Stay as healthy as you can.

Sarah_Walton

@Sarah_Walton

@ItsMewithMS thank you for letting me know about Dr Booster i’ll definitely check it out! @topup thank you i’m waiting to hear from my MS nurse over the next day or two xx

mcknighm77

@mcknighm77

Tried ocrevus infusion back 2017 and had a bad reaction. Changed doctors who encouraged me to try it again so last week I tried it and thank goodness no bad reaction 🙏🏽

KateB

@KateB

@mcknighm77, what bad reaction did you have? @Sarah_Walton, I am in the middle of my first two infusions and so far so good, I feel good. As @ItsMewithMS says, it's nice to sit down, read a book and chat to people. Next first half on Monday

mcknighm77

@mcknighm77

Hi Kate. When i first had ocrevus infusion I had racing heart palpitations. But this time I didn’t. So far so good. Good luck with infusion. I’m hoping this medication works for me😉

aleks

@aleks

Comment deleted.

aleks

@aleks

Hi! I changed my Tysabri to Ocrevus in 2019. I also started off with allergic reactions (fever, headache and rash) so they decided to slow down the drip and, well, I spend around 9-10 hrs at the hospital because of that. Still, I think it's worth it, much more comfortable than Tysabri (it's only 2x year!). Haven't seen much change though, apart from my own comfort and some peace at work for being less absent than during Tysabri :)

juliet

@juliet

I have on ocrevus I think for two years now and I like it much better than sticking my self with needles. I have had no side effects from it and no new lesions since I started it.

SLR91

@SLR91

I started on Ocrevus (in Leeds!) last year, iv now had 3 infusions. Ive had infusion reactions and had to have my second infusion slowed down, but as its only twice a year its something I can deal with! I was straight onto this, not changed to it from something else. No relapse since.

Ray_Thomas

@Ray_Thomas

Been on it for over a year now ... no issues what so ever other than boredom !! ( no the type to sit still for any length of time )

Sarah_Walton

@Sarah_Walton

Thank you all for your responses! @SLR91 nice to see another person from Leeds on here! X

LadyHawkEye

@LadyHawkEye

Hi I'm also based in Leeds and am about to switch to ocrevus. I was on tysabri, which has been amazing for 3 years but my jcv result turned to positive so I need to change. I'm a little apprehensive about the swap but have heard a lot of positive things about ocrevus so fingers crossed!

Miski96

@Miski96

I’m on the ocrelizumab infuses it works for me I don’t have take any medz at home which is good because I’ll forget. It’s a whole day in hospital on the clock care. It’s every 6months it’s a good drug I was diagnosed in July of 2020 and they put me on the most fastest drug which to be ocrelizumab it help with rrms. Nope we’ve just gotta take it day by day and thank the lord 😊

cherbear1974

@cherbear1974

I was diagnosed last year and was put on ocrevus. I went from walking with a walker to walking on my own again so I definitely have good things to say about it for sure.

Apples

@Apples

I am on GILENYA now. Had relapses on Tecfidera.Doing much better on Gilenya.