New to the group

[sailing42]

New to this group. wondering how others who are on Ocrevus are doing? I have been doing the infusions for 2 years and having some side effects during and after infusions.

[starlight5]

Welcome! What type of side effects do you have? I have been on ocrevus for several years and I usually get some itchiness in my ears and mouth. They have to stop the infusion and give more premeds, then continue. My neuro told me to continue to take benedryl and tylenol for 24 hours afterwards.

I do have facial flushing, looks like sunburn, for a day or two afterward but that is from the steroids.

[RoyceNewton]

I am not on Ocrevus, but I had heard histamine or antihistamine mixed with the infusion does help a little with the itching, talk to your doctor about it to confirm the details.

[carolek572 CommunityAmbassador]

Welcome to the forum, sailing42

I am on Ocrevus since 2018 and I am doing extremely well. I have posted of my infusions. You can look them up by putting Ocrevus in the ‘Search HealthUnlocked’ box in the upper right hand corner. Or you can search my posts by clicking on my avatar.

I look forward to hearing more from you. Keep Smiling

[twooldcrows]

i agree with others about letting your doctor know about your problems and of course you can call them about your concerns that is why the company is there for you if there are any problems...no problems ...

[sailing42 in reply to twooldcrows]

I have had reactions after every infusion mostly tummy issues that last a few days can't seem to keep anything down, I have called ocrevus each time. Just had my last infusion and decided to try the faster infusion the next time so instead of 7 hours it will be 4 hours. I hope this was a good decision.

[twooldcrows in reply to sailing42]

do you eat before you go to have the infusion ,maybe if you are not that is the problem or it could be what you are eating just before or just nerves that you normally don't have ...take care and sure hope can resolve the problem ...wow ...i read or play puzzles in a book or sleep during it and drink lots of water or coffee ...try different things to relax yourself for that might be all it is ....love and finding the happiness to enjoy getting the meds to make all slow down for you ...oh just thought could it be the premeds that they give you before the infusion ...on an empty stomach that would bring the acid feel ...wow ..maybe that is all it is ...anyway hope it is a great time this next time ...

[sailing42 in reply to twooldcrows]

Thanks I have tried lots of options but seems like a liquid diet for a few days works best not great but better. Keep smiling and make great memories along your way.

[kdali]

Welcome! I’m not on it anymore, but I have every confidence that it prevented new lesions while I was.

[Jer29-11]

Hi and welcome! I’m not on ocrevus, but something similar (ofatumumab). I have reactions every infusion and for about a week after. So annoying, but grateful it’s just a few times a year. 😊

[ahrogers]

I have been on it since 2016. I got a rash on my face during the first infusion that went away when they slowed the infusion and never happened again. I also had slightly swollen and tender lymph nodes in my neck for about a week the first few infusions but not since then.A couple years in I did get a slight itch in my throat during the infusion. Since it was so slight I didn't tell the nurse and it only lasted about 30 minutes. I haven't had that the last 2 infusions though.

They do premedicate me with 50mg Benadryl and 1000mg Tylenol orally and solumedrol IV.

It is working well, no new lesions and very minor worsening of my symptoms. I love the twice a year infusion schedule too.

I hope your symptoms are mild and go away so you can stay on it.

The copay assistance program is great too. I have a $4600 annual deductible and it covers all but about $100. I schedule my infusion in mid January so everything else the rest of the year is covered.

[mm1527mm]

3rd full dose today. Have had itchiness redness on face and ears have taken benedryl have been stable thank god hope it continues

[Cutefreckles72]

Hi Welcome. I am on Ocrevous and I will have my 6th infusion this month. So far, I haven't had any side effects. I am given Benadryl and Tylenol both pills and I relax and fall asleep.

[greaterexp]

Welcome!