Ocrevus treatment

Hi @Louisej, I did not have any injections as such before starting treatment.

Before treatment i was tested for jcv virus (If positive they will not all this treatment as far as i know)
I was also asked to visit the hospital for bloods to test a lot of things which i do not know what exactly they tested. I am sure this happens every year from what i was told.

Once I had the all clear my Ocervus took place. It may be different for all hospitals.

Hello again all, I’m glad I started this thread some time ago and thanks for all your replies, I am due for first infusion mid august and will update as and when …. It has really helped me reading all your replies to see how the treatment affect different people so again, thanks for the replies. Hope you all are feeling well ……

Hi all me again …… just an update as I had my first dose of ocrevus last Wednesday. All in all it went very well, no adverse effects during the infusion and apart from feeling more tired than usual the last few days so far so good. It is a bit nerve racking the first time as you don’t know how your body is going to react with the stuff, I was very nervous and every ten mins I was expecting to feel a side effect of some sort but thankfully nothing significant. Heart rate up and down but this was probably due to me working myself up.
Happy to answer any questions anyone may have

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My Infusion day
I have just had my first infusions with Ocrevus. Here is my vlog entry. It’s a ‘short’ so less than a minute. I have to say I really enjoyed it :hugs:

Hi, i am asking the same question, very anxious of the side effects of ocrevus
I’ve been told by my consultant to make my own decision what medication to go on its a mindfield !!!

…I’ve got relapsing remitting, ponesimod was offered to me but as its a new drug there doesn’t seem much info for it is anybody on it ?

Had my first session yesterday. It’s fine. No problems, during or after. Good luck. Honestly, don’t worry it’s fine :slight_smile:

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Hi Josie I’m very late to this topic One thing that really made me laugh was ‘and lots of interesting snacks’ haha I’m intrigued, What were your interesting snacks?

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Hi everyone,

Newly diagnosed (june 2022) RRMS. Comemnced my first treatment of Ocrevus last week… infusion day 1 (half dose) was fairly straight forward, slight scratchy throat but quickly dealt with and resolved! The worst part was probably getting the cannula in :rofl: (i have terrible access lol).

Post infusion i slept ALOT for the next 2 days… agree with a previous post its like having a bad hangover… back to work on day 3 with still some fatigie but manageable.

Question…
Has anyone else experienced hot flushes post treatment? Im now 5 days in and still rosy red hot cheeks and sweats coming on and off through the day… people at work thought i was menopausal :woman_facepalming: (im definitely not :rofl:). Havent been able to find anything online about post infusion symptoms in the medium term.

Thanks

In answer to your question, I was advised by my nurse that Ocrevus affects hormones and they don’t know why. This was only after I said I’m having troubles around my cycle which appear to fit with peri menopause, this started after my first full infusion - next one due in Jan.

Your username suggests you’re 10 year’s younger than me so I would agree that it’s probably not peri menopause, but my advice is to keep an eye on your hormones/cycle just in case it’s related.

Xxx

Hello. I just posted about ms sufferers who are a little older. I am 47 so prob older than you but you mentioned peri meanopsuse. I wondered whether Ocrevus was any good / worth going on. Can I ask how you are getting on with it? Thanks so much.

Hi all,

I was diagnosed with relapsing remitting in 2015 and have been on Tecfidera since. For the past 6 months, my neurologist and I have been discussing new medication as I’ve had new lesions in MRI scans and some relapses. One medication my neurologist suggested is Ocrevus so I wanted to check how people find it in terms of a normal life routine i.e. work, sports, social.

I’m from Scotland but have lived in Luxembourg for the past 6 years and my neurologist recommended I look on forums to see what people think from their own experience.

Any tips/info would be great.

Thanks!
Joanna