Ocrevus experiences

[Stronglady]

Just curious how many people were able to go to work the day after an Ocrevus infusion and how many people have seen improvements?

[kdali]

The day after my first half dose I was in bed a lot and my husband was at home to take care of baby. When I get my first full dose, we will do the same.

[Iona60]

I was good for the first two weeks. It's weeks three to six that set me back. We are all different.

[Raingrrl]

Stronglady ...I’m retired so I don’t have work to go back to. The day of the infusion and the following day I had a bad headache and my usual infusion fatigue. After that the headache came and went for a couple of days but otherwise I was normal for me. We are all different though.

I hope you do understand that the action of Ocrevus is meant to stabilize MS not improve it. It doesn’t even finish depleating the B cells in our immune systems for about 14 days following the infusions per the FDA documentation. I’m guessing that the pre-med steroids are giving some people the idea that they have miraculously improved right away. Or maybe it’s a placebo affect...I’m not sure. The problem is that these anecdotes of miracles give people false hopes and expectations.

[Stronglady in reply to Raingrrl]

I understand but having seen improvements with other treatments I am staying optimistic.

[ssdw1958]

I also am retired I was a little tired and I had mine on a Friday so my husband was home to help me if I needed anything.

I don’t know your work schedule but if you don’t work on a Saturday you should request to have the infusion on a Friday.

[ahrogers]

I have been on it for over 2 years and have only taken the day after off once. It was nice to have an extra day off but not really necessary, I didn't feel any different. I haven't seen any improvements but does seem to have slowed it down more than Rebif or Gilenya did. I was originally diagnosed as RRMS but probably really have PPMS since the new symptoms that come don't get better but rather stop getting worse. I was diagnosed in 2014 so relatively new and needed to see the course for a while before knowing which type.

For your very first infusion you might want to take the next day off but beyond that you can decide if you want to use a PTO day for that or not. I prefer to save mine for vacation 😁

[CraigS]

I e had a couple of treatments with Ocrevus and the initial side effect is staying up for two or three days. At first I didn’t know that would happen, the prednisone that they give me makes that happen. Now, I look forward to getting some recording in at my studio in the quiet of the night. I live next to the flight path at San Jose airport, so recording can be a challenge. I’m on disability, so I haven’t worked in a couple of years. I sort of enjoy the ride and then afterwards I crash and get some rest.

[bavery207]

Stronglady I had 5 days of fatigue after my first 1/2 dose. Since then ( I just had my 2nd full dose) I have not had any type of reaction. We all seem to react differently it seems.

[miwido]

On my first 1/2 dose, I had a lot of itching and fatigue. It lasted for several days and I ended up taking off for a couple of extra days. On my second 1/2 dose, I planned to take off again, but actually could have come on to work the day after. It went much smoother than the first. I haven't noticed any significant changes since, but it has only been about a month. I am staying optimistic on improvement, but also trying to be realistic that it may not help me improve. As long as it keeps me from progressing, that'll be wonderful!

[BR0K3NBLUE]

I don't recall if I took the day after infusion off from work my first 1/2 doses, but I doubt it. I've been able to work the day after without issue.

If anything, I'm starting to consider taking time off during the crap gap just preceding infusion. 🤯