Last reply 1 week ago
The First Ocrevus Dose

Nurses: “How are you feeling?”

Me: “Like I’ve won the lottery. Let’s get going before y’all change your minds.”

So, for me, it was entirely uneventful. Nothing to say other than my ears went a momentary pink and warm and I have the mildest of headaches.

I am sitting at home wondering if I have been pumped with saline all day 😉

Next infusion in a fortnight’s time.

The literature concurs with the little or non-existent infusion reactions.

Given the drugs efficacy and excellent safety profile, the clinical thought leaders support of it and c. 30k administration instances to date, I really struggle to understand why someone wouldn’t take it if offered.

Br,

Dominic

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grandma
1 week ago

Glad all went well👍🎉


dominics
1 week ago

Thank you. I am a little surprised. It’s like I get a lot, for nothing in exchange from me.

I expected to feel a bit sub-par!


kara_fisher
1 week ago

I’ve been on Ocrevus for a year and half now. I’m glad you didn’t get any side effects. After the first half dose infusion I felt fine. The night of the second half dose infusion the severe migraine showed up. Now on the night of each infusion I get such a severe migraine it’s debilitating. Nothing touches the pain. It’s only on the night of the infusion. I also get itchy throat and some mild tongue swelling during the infusion but Benadryl helps. As far as what it’s doing for the MS, I haven’t noticed any difference.


dominics
1 week ago

@kara_fisher that is a drag, I feel for you. My wife gets migraines and they are ghastly.

I really don’t expect to get something for nothing regards side-effects so I am not trumpeting this as an indication of future infusions. I feel lucky. We’ll see what the second holds.

Regardless, seeing the data on Ocrevus I wouldn’t change my choice.

For me, in my situation (age, type of MS, duration of diagnosis, nature of progression etc) I am so fortunate to be able get it. The only step up would be HSCT, and that is some 5-8y away as regards availability on the NHS.

My entire approach is based on holding the MS at bay for as long as possible by diet, exercise and the best drug therapies. I’d have the stem-cell therapy tomorrow, but I’m not willing to go to the slightly iffy clinics overseas. I’ll wait for the NHS which has some of the highest standards of research and clinical expertise in the world.

Best,

Dominic

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