Ocrevus : Hello All, Sending this on a... - My MSAA Community

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Hello All,

Sending this on a phone so I do apologize for any grammatical errors. Just approved for ocrevus ! I actually work full-time so I drop In from time to time at work. Not a lot of energy after I get home. Whoever has DONE these infusions please give me the good, the bad and the ugly. I have read that many people notice urinary incontinence relief fairly quickly and that alone would be a huge quality of life plus for me. The janitor at my work actually emailed my corporate headquarters saying that he didn't appreciate having to dispose of my pads. He actually grabs garbage out of all of our trash cans including the bathroom into one large bag so he doesn't use new garbage bags...oh with his bare hands too. So that is actually the worst of my many ms gigs. So please just give me a quick run down of your experinces pretty please. Many thanks.

9 Replies

Seems like there are so many people going on Ocrevus. I sure hope it is the new wonder drug. I have no experience with it, but hoping all goes well for you and it helps with your symptoms. Just a thought on your problem, have you considered bringing plastic bags or zip lock bags to use for disposal?

Andrea27 in reply to Iona60

I've had 2 doses of Ocrevus so far, the last was in July. Both infusions went smoothly. I didn't experience any infusion reaction and actually drove myself home after the second. My latest MRI was stable with no new lesions!

I've never experienced any urinary incontinence so I can't comment on this. I do feel like I have a little more energy, not so fatigued.

Hope your infusion goes well

Yes. Even zip lock ones.

SometimesCrazy That is just mean of the janitor to say something. I am sure he has to deal with far worse things.

SometimesCrazy I was diagnosed with PPMS 2 1/2 yrs. ago. I had the two 1/2 doses of Ocrevus in August. During the infusions I did not have reactions other than my BP dropping and I was really tired for about 5 days after the 1st dose, not as bad after the 2nd. No noticeable changes in symptoms. I have not had urinary problems so I can't address that question. Sometimes people do not report feeling changes for 3 or 4 months, so I am in wait and see mode right now. Wishing you well.

SometimesCrazy That is the janitor's fault for using his bare hands. You just never know what is going to be in a trash can. I have no experience with this new drug but I hope that it helps you and you can get some relief.


Thank you and yeah it is the janitors fault. HOW GROSS. That was six months ago. I Sent a letter to the E-Verify program and his two female workers no longer accompany him. Board of health in another six months. Thanks again! I totally had to vent on that one. Corporate offices are two thousand miles away and he sent them an email bitching about his job.

I had my first dose on Tuesday of this week during the procedure coughed once and they actually start the whole thing but I believe that was because they give you two Tylenol before and they were big pills and I choke on them and I think it's scratch my throat but once everything was OK and they started up again I also have issues with my bladder but not on that day. I know what you mean with the steroids what they do I had some issue that night but not what you would think. The only problem I had was my legs were really weak but then again I was a rollator and wheelchair. It is now day four and I feel pretty good 😊. So hang in there a least for me it wasn't what I thought would happen with the steroids you only get a small dose of them it's not like when you go in just for steroids.

Hang in there I hope you do as well as I did but not the weak legs.

Now for that janitor he is an idiot it's his problem if he puts his bare hands in any trash can and he is not nice I would like to say something else but I won't.

SometimesCrazy, I have just had my first full dose of Ocrevus last Wednesday. I have been posting my experiences with it since I started. If you would like you can check out my posts on my profile and have an idea of what I have been dealing with.

As for the issue of the janitor? Well, trash bags are used for a REASON! All I have to say on that one cause that just common sense if you ask me.

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