Leg heaviness after first half Ocrevus

[Lmanuel75]

Hello everyone, giving another update. June 1 was my first half Ocrevus. Horrible reaction.. Canceled my second half that was scheduled for June 15. Discontinuing this drug. Has anybody had leg heaviness from this drug? I never had it before? It started today and it’s almost been 3 weeks.

[starlight5]

What does your neuro say? With your other symptoms it sounds like you may have been relapsing at the time of infusion and still are? Were you offered an MRI to look for new lesions/activity? Or maybe is it all a bad reaction to ocrevus. Either way, hope this all resolves and you are back to your baseline soon.

I have had 7 infusions so far and have never really noticed any difference afterward.🤞

[Lmanuel75 in reply to starlight5]

You’re so lucky you’ve tolerated it. I wish I did. My neurologist says there’s no way to tell. But I know for sure I wasn’t having any of these symptoms until my infusion. It’s just a little bit too coincidental for me to believe I’m having a relapse right now. I’ve never even had this symptom of leg heaviness. I’ve also been having a lot of nausea with the dizziness. It’s just very strange. Doctor is not giving me an MRI because I just had one in May and it’s always no change. steroid treatment starting Tuesday

[Mollyabigail]

Gosh, lmanuel75. I have had 3 Ocrevus infusions without side effects. Having said that, I do have a heavy leg. But it has been that way since my diagnosis. It sounds like you need additional testing, maybe? I agree with starlight5 - Tell your neurologist! Prayers for guidance for you!

[ahrogers]

Not after my Ocrevus infusions but when I had my first relapse about 6 months after starting Gilenya I had leg heaviness and facial numbness. That is when I switched to Rebif. A year later in 2016 I went on Ocrevus trial and have been on it ever since. I did get a rash on my face with the first infusion that resolved by slowing the infusion. The first few times I also would get swollen glands in my neck for about a week. Now I have no symptoms except from the pre-meds.I hope things improve for you! I sure wish there was a magic drug that worked for everyone and didn't have side effects!

[spskags]

So sorry for the leg heaviness, it may be the Ocrevus. It also could be a new MS symptom. I would reschedule the Ocrevus infusion and have a conversation with your Neurologist. You may need an MRI to check for new lesions and any other changes.

[Jer29-11]

So sorry to hear! This recently happened to me. I’m on Rituximab, which is similar to ocrevus. I’ve also been on ofatumumab when it was offered in IV form, now kesimpta. I’m highly reactive to these medications. I always have infusion reactions and I’ve been getting infusions for the last 3 years every 6 months because my body won’t tolerate a fast infusion rate.

It usually takes me a week to recover, but this last infusion in March I was reacting for 2 weeks after. Exactly one week after infusion, my legs got extremely heavy. I ended up in the ER because I was having trouble walking. They paged my neuro there and he said it’s not infusion related and “should” go away, but I don’t believe that at all! Just like you said, too coincidental. It took a few days for the heaviness to go away and another week to feel normal again.

I had my yearly in person appt with my neuro a few weeks ago and he continued to say the same thing. I know it was from the infusion though. Anyways, I hope you’re feeling better soon and that you can find a medication that works for you ❤️

[Lmanuel75 in reply to Jer29-11]

I’m glad you ended up recovering. Thank you for your response. My leg heaviness ended up going away the next day but now I’m still battling this serious case of vertigo that started the day of the first infusion. I’m actually in the hospital right now because it got so intense. They giving me steroids and I’m waiting on an MRI. It’s been three weeks straight up dizziness/vertigo/nausea.

[Jer29-11 in reply to Lmanuel75]

Oh my! I’m so very sorry! I had really really bad dizziness and lightheadedness when I was first diagnosed with MS. I was in the hospital for 5 days. It is so debilitating! I’ll say a prayer for you to get better soon. Please keep us updated 🙏🏻❤️

[lbenmaor]

I'm so sorry to hear that. I hope you feel better soon.Leslie

[pamgarner]

no, but everyone does have a different reaction, so sorry you had such a severe one

[IFwczs]

My MS got remarkedly worse after Ocrevus, so I fortunately stopped it after a couple of years.

[Lmanuel75 in reply to IFwczs]

Did you return to baseline after stopping O ?

[IFwczs]

It is a very long story. Let's just say that I was not the only one on this blog whose MS progressed significantly on Ocrevus. It is chemo, after all. Just know that it stays in the body for up to 12 months after the last infusion.

[Lmanuel75 in reply to IFwczs]

I’m reading all of these horror stories. Do you think your symptoms improved though? After the 12 months? Did your B cells come back?

[IFwczs]

I had no B cells before any of the Ocrevus infusions. And now who knows - my last infusion was over a year ago. But I did start falling regularly on Ocrevus, and my gait was definitely impaired. February 2021 was the end of my Ocrevus experiments.

What are your plans?

[Lmanuel75]

How did you already have no B cells before Ocrevus? Were you on Kaseempta before? I don’t plan on taking any DMT‘s. I had already been off for the last 8 years. I’ve had MS for 27 years and I’m pretty mild. Never have any change on my MRI since the 90s. This is my biggest regret listening to the neurologist because I had a recent minor flare. Who knows what kind of course the disease is going to take now and who knows when/if my B cells will re-populate?