Ocrevus flushing

Just a quick one looking for anyone else that has experienced this. I had my first Ocrevus infusion mid-October. I had quite heavy flushing that day and the day after which went away fairly quickly. I’m now getting it most evenings. My MS nurse has said that she’s never come across it and just left it there. I get quite bad in the evenings with weights around my arms and legs plus my chronic headache gets worse but flushing plus hot ears is odd and I can’t find any reference to it online.

Anyone else experienced this?

Oh and a happy New Year to anyone reading this :face_blowing_a_kiss:

Hi @c.r.mcdonnell I haven’t had this (other than a couple of days after) on Ocrevus, however I did it experience it on a biologic for Ulcerative Colitis I had to inject weekly. Although everyone’s experience would be different, it did end up stopping after a few months. If I remember correctly as it was a few years back, I took antihistamines daily to help. It might be worth getting in touch with the society helpline to see if they have come across this.

Not sure it helps much, but this is from the professor of neurology at Barts.

“Infusion-related reactions (IRR) are relatively common and experienced by about 1 in 3 subjects with the first and second infusions. Typical IRRs include pruritus, rash, urticaria, erythema, flushing, low blood pressure, pyrexia, fatigue, headache, dizziness, throat irritation, oropharyngeal pain, shortness of breath and throat or laryngeal swelling, nausea, tachycardia. The risk of anaphylaxis is very low.”

Anti-CD20 therapies - by Gavin Giovannoni - MS-Selfie

I’ve not experienced that with ocrevus, but I did experience it with kesimpta. I had my first half dose in October and 2nd dose in November. Have you spoken with your neurologist regarding this issue? I hope things settle down for you very soon.

Thanks for the info @cavworld Good shout on the antihistamine. I may go that route if my ears and face get really hot.

The ulcerative colitis situation sounds bad, hope you’re alright now

Thanks for this information @whammel. My nurse thinks it shouldn’t last this long but who knows. Being as we’re all so different

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Thanks @animali, when you say you experienced it with Kesimpta did it only affect you at night also? My neurologist is a bit like a brick wall to be honest. The nurses are far more helpful but I may pass it by her if she deigns to talk with me again. Think I might be one of those annoying patients!! :face_with_hand_over_mouth:

Had my second session yesterday and I’m flushed today. Same after my first.

Are you having the subcutaneous infusion? The first time I had no bruise but this time it’s quite extensive x

Not gonna lie @lornak21, I had go google that! :face_with_hand_over_mouth: yeah, I did. Didn’t really get any bruising but after the first two I flushed for a couple of days on my cheeks and chest but now it’s my cheeks and my ears go really hot in the evenings.

It was happening a few hours after the injection. Sometimes you have to keep pushing to get answers or results. Tbh the nurses helped with the change of DMT after I was getting psoriasis every month after the injection. I would definitely speak with them again, it’s better to check. :crossed_fingers:you get some answers.

I know, right :man_shrugging:t3: I am so well versed in MS now because I felt like I had to own it to get anywhere, which, I’m sure, is probably a good place to be. I can’t seem to get my neuro to understand PIRA and I felt embarrassed bringing it up :man_facepalming:

Anyway, I’m sure it’ll all come out in the wash. I thought maybe someone on here had experienced it. I shall update the thread if I ever get to the bottom of it