I have been offered treatment with Ocrevus infusion. Anyone have experience on this?
Me too. I am changing to this DMT soon. I searched the forum and found several discussions on the topic. I will be having ocrevus infusions. I hope it goes well for you.
Hi Chilton.linda, I start on ocrevus last year with the 2 half doses and was due my first full dose in the beginning of may but unfortunately I was in hospital so it had to be rescheduled. Anyway I noticed that my fatigue improved slightly which was a relief. So far I’ve only had one infection, which is great as when I was on kesimpta I picked up an infection every month.
They usually give you antihistamine ,then methylprednisolone before the infusion to reduce the risks of a scratchy throat etc. They monitor you through the whole process, they check by dip testing your urine before they start yo make sure you’ve not got an infection. Them I speak with the ms nurse update her on how I’ve been, then they start, I don’t have the antihistamine as they contain lactose which I’m allergic too, so go straight onto the methylprednisolone then the ocrevus.
I hope you both get on ok when you go for your first infusion. Take things with you to help pass the time away.
Thanks for the replies. There seems to be a great deal of information for and against ocrevus,
I am an older person living remotely, currently in reasonable health, I am uncertain of the benefits I will have against the downsides of infections etc.
I’m interested if anyone has a similar experience?
This is my 2nd DMT and I’ll be 58 in November, I live alone, and at present still manage the stairs, but you never know what’s going to happen next.The nature of these meds is to suppress part of the immune system to stop it attacking your body so it’ll make you more susceptible to illness’s. But I would rather deal with the odd infection and still be able to get around. As before I started a DMT all the relapses affected my head and legs.
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Thanks animali that’s a good point. How is the effect of the treatment monitored?
So I have bloods taken about a week before my infusion, they then dip test your urine once you arrive at the infusion centre because if you have a UTI the steroids they give you can effect you if you have a current infection. I’m then seen by the ms nurse to discuss how I’ve been and then if everything is ok they start the infusion of the methylprednisolone before the ocrevus. I had a MRI of my head before my first infusion. So I had my bloods taken last week, so I’m just awaiting a date for my first full dose infusion.
So the first half dose goes in via a slow infusion rate, to see your body’s response, then you go back in 2 weeks time for the next half dose and the rate is slowly increased, and they record your response. You’ll be monitored throughout your infusion. This is followed up by your ms nurses, whether you contact them via a call or email. We are all different in how our bodies respond to these drugs. I experienced loads of issues on kesimpta, but so far on ocrevus I’ve been ok, I still get psoriasis but it’s not as bad as it was with kesimpta. Sometimes you have to hit a compromise, I would rather slow this down than keep having relapses.
I hope this helps you.
Thanks for taking time to give me such a considerate full reply. Lots to think about. I hope all continues to go well with your treatment.
Thank you so much, and I really hope this helps you to decide what treatment is right for you. Take care.x
Thanks to all who write here about Ocrevus. I have been trying to decide whether to accept it. I think after long thought I will not have this treatment yet. As my health is otherwise good and I can deal with the symptoms I have. But I fear that I am influenced by being older and all that goes with that. My thoughts and good wishes to all taking Ocrevus now.
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Hi, I got diagnosed a month ago and I’m 56yrs, living alone. I’ve will be starting ovrevus infusion in the next couple of months. I’ve been advised to have the Covid, flu, shingles and pneumonia vaccine but due to it being June there isn’t a flu jab til September. I really don’t know what to expect before or after the infusion also can anyone explain what this crap gap is please?
The crap gap is when some of your symptoms return . Personally I’ve experienced y first crap gap with ocrevus and have to say the fatigue was god awful I needed at least 3 naps to get through the day and my walking was bad with the foot drop and even wearing a brace I tripped up several times yesterday walking from the lift to the infusion site. But when I left, I felt the difference!
My GP surgery refused a lot of the vaccines and only allowed me to have the flu and covid jobs, it’ll depend on the area you live as some GP surgeries are more accommodating. You can have to flu jab later, but follow the recommendations for when it’s safe to have, as I believe it’s meant to be a couple of months afterwards.
The first dose is split into 2 half doses, and they start the rate very slow, then slowly increase the rate. Take a book, or iPad with you. Some infusion centres provide meals, but they provide drinks. I hope everything goes well for you.