Ocrelizumab / Infusion fatique

Symptoms and treatments
1

Hi there,

I was wondering if anybody could share their experiences following their first infusion, especially if Ocrelizumab/Ocrevus.

I had my first on Monday and had a mild reaction which dissipated with more antihistamine and a slower infusion speed. However, it’s now three days later and I still feel super lethargic and a bit shaky and heavy heartbeats that come and go in bursts. It feels like anxiety and is thoroughly unpleasant, plus there seems to be an element of depression there too - my MS nurse said this could all last for two weeks, at which point I then have Part 2 of the first infusion (they split it 5050 the first time around), so could mean a further two weeks feeling pretty wiped out, a month in total.

Keen to hear other people’s experiences and side effects - and duration!

Thanks,

Natasha

2

Sorry forgot to say, I know exactly what you mean about the heart beats. I felt like mine was thudding away, it felt like it was going to burst out of my chest, was a bit disconcerting, it really did feel like panic…which then made me panic :confused:. I did wonder whether it was the Ocrevus or the steroids that you get before? All symptoms and the fatigue went so day 8 I felt fine.

3

:wave:I found I felt not quite right for exactly 7 days after both 1/2 doses. On day 8 I suddenly had energy and felt back to normal which was great. When it comes to the full dose, I’m preparing myself to feel v low on energy for at least 7 days afterwards but I’m guessing double the dose means 14 days of sofa and t.v.

4

Hi there,

I wanted to say thanks so much for your responses which helped me. My infusion side effects seemed to last 7 days exactly like yours and the second half dose was slightly better although still very fatigued, depressed and wobbly. I’ve realised that part of this is due to the steroids that they give you first, which give me mega carb cravings and low emotions.

Would love to hear how your second infusions goes with it being a full doseage, when you have it.

I’m now also noticing that my hair is thinning, which must be down to the infusion.

Thanks,

Natasha