Forum

U.K. experience of Ocrevus wanted

Hello everyone,

I’m looking for people’s experience of Ocrevus in the U.K.

I was dx 2012, initially on Avonex and now I’ve been on Tecfedira since 2015. Whilst I’ve been relatively stable my mobility has significantly reduced. My EDSS is now 6.5 and I walk short distances with two poles.

At my last Neuro appointment we discussed moving to Ocrevus and I’m now waiting to start. Last I heard I was 107th on the waiting list.

So, I’d like to ask for any comments from people who are already having Ocrevus please?

I’m sure there are many other MSers on here who would be helped by this topic. Thanks.

Happiness & health

Adam

Just starting it… first infusion was yesterday (25 Jan), and as yet I don’t really feel much difference… sore hand where they couldn’t find a vein in my arm (a regular problem with me… shy veins) and had to put the cannula in the back of my hand. Infusion was uneventful (so uneventful that I think I might actually have fallen asleep at one point), although trying to take the drip stand with me to the loo was an entertainment! It ended with a saline flush which wasn’t brought up to room temperature prior to use, and I felt that a bit… quite reassuring as I could feel that everything had been in the right place, from the cold feeling! So far no problems. But that was only the half dose… the other half next week, and after that we go on to full dose. Will update if I get any reactions etc. I was absolutely shattered at the end of the day, but if you need an excuse to sit in a comfy armchair and read a good book for a few hours…I can cope with that.

Update. One week on from first half dose infusion, and I have been told by Other Half that my brain fog seems to have cleared a bit already, he thinks. Also my ‘low mood’ isn’t quite so low since I switched from Rebif (beta interferon). So far, a thumbs up for Ocrevus. Although the amount of checks, hospital and GP visits, blood tests and wee samples required is rather annoying - far too much for a bear of little brain to remember! - but overall it’s looking promising.

I’m living in Scotland and I was diagnosed with RRMS in August 2017. I’ve been on Ocrevus since October 2017, just before my diagnosis I’d had 3 relapses in 8 months, however had thankfully recovered from all of them with no real lasting symptoms. I’m on a clinical trial for Ocrevus, so I have to have half yearly MRIs, which have all shown no further disease activity. I was incredibly nervous the first time I went for an infusion, however have never had any kind of infusion related reaction. Ocrevus definitely cleared my brain fog and has made me generally less tired. It’s been a really positive drug for me so far.

Hi folks, I am in Scotland and was diagnosed with MS in November 2018. My neurologist has told me to discuss DMT options with a specialist nurse. I am very put off most of the DMTs due to side effects - I work full time and cannot afford to be off sick with weeks or months of side effects. However I have been looking at Ocrevus which seems to have less lasting side effects than most of the others. I would love to hear of others experience with this treatment. Have you had side effects? How long did they last?

Hi all This week I’ve been put forward for Ocrelizumab. I’m pleased but also apprehensive. I’ve now just got to clear the screening chest x-ray and blood tests and then await my initial dose. I’ve already passed the funding panel. So would people be interested in an account of my initial experience if so I’ll update this thread as I go. Health & happiness Adam

I start ocrelizumab on 29th April so interested in others’ experiences. I’ve only had bloods as prep and will send urine sample next week plus take one with me on the day. I’ve not been offered a chest x Ray. However, have heard of others having them plus ECG. Has anyone had to have vaccinations?

I’m really interested to hear of others’ experiences on Orevus as it’s the one my Neuro has recommended for me! So I look forward to any updates and hope it is good for you all!

I’ve had both halves now. Was quite rough after the first half - tired, achy, sick and dizzy. Took antihistamines at my MS nurse’s advice and antiemetics from my GP. Better after 2nd half though but did keep dosed up. I’m still not quite right - more tired and achy than normal but I’ll take that if no progression. It does seem to have stopped my periods too but could be my age - I’m 50. Funnily enough, Rebif messed up my cycle too. If you’re on Facebook there are closed facebook groups there which could also be useful for other experiences.