Last reply 3 months 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
4 months ago

Glad all went well👍🎉


dominics
4 months 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
4 months 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
4 months 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


willowr
4 months ago

@dominics thanks for your updates! i’m starting ocrevus in april (next availability, there’s a waiting list) and i find people’s accounts helpful to get more of a picture of it. i’m glad your first infusion went well, have you had the second yet?


dominics
4 months ago

@willowr it is 0736h on Monday and I am sitting outside the infusion room (round 1, dose 2 – the 300mg second half of first dose) as I type! Mrs S dropped me off on her way to work so I have some time to kill as I am 20min early.

There was another thread on the forum ( @stumbler is good at retrieving them, I am on a phone ATM) written by an American. She described being full of energy for the 3 or so days following. That made me think: I was waking early and feeling v normal.

When I say normal I mean how I was before MS. When you never had to consciously think about how to manage your day in order to make it from one end to the other! So, normal is actually pretty cool.

I had to have the trio or ‘regular’ blood tests last week. LFT (liver function test), U+E (urea and electrolytes) and FBC (full blood count). These are just a check to ensure I haven’t picked up any lurgy in the meantime, a sensible check.

I am fortunate that in 25y I have stayed relatively fit, reasonable weight etc. I have smoked on and off as I am v partial to a roll-up with a beer. I have also worked v hard to keep my brain active. It was speculated by a friend (a medic) that one of the reasons they chose me to go first was that I was less likely to be susceptible to any potential unpleasantness. That said, I felt absolutely nothing from the infusion apart from the anti-hisamine making me dozy for an hour or so.

I am given to understand that the UK military has used it a few times and it has been entirely uneventful. FWIW.

Fingers crossed for you. A waiting list sounds like the hospital (UK?) Will have some experience with it before it is your go.

Best,

Dominic


stumbler
3 months ago

@dominics , @willowr , I can look up that thread, if you insist. Although, when I read it, I immediately thought that it was the euphoric feeling the Steroids (part of the protocol) give you for a short time.

Unfortunately, it is followed by the “Steroid Crash”, where the status quo is restored.

Does this sound about right?


mlgilber1
3 months ago

It is from the pre infusion steroids and it’s usually a small dose compared to steroid infusions, usually 150mg of solumedrol to help prevent infusion reactions. I never got energy from it and felt worse for awhile. It takes awhile for the Ocrevus to start working and can take up to 2 years. I started feeling better a month after both infusions and significantly better after 2 months. I will have my first MRI next month since starting Ocrevus and I will update on if there’s been any halt of progression, but it will only have been 4 months since starting, but I’m so thankful to finally be feeling better and finally have days where I do feel almost “normal.”


dominics
3 months ago

@stumbler – ish. Enquired today as I had my second fix this morning (out now). Pretty low dose methyl prednisolone used. 1/2 gram. The Alemtuzumab patients get 1mg, apparently.

I imagine steroids affect us all differently. Quite possible.

Best,

Dominic

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