Ocrevus redux

[ssusan]

I am finally scheduled for infusions. Has anyone started it yet?9

[Howie]

Good luck with it, and keep us informed.

[Sunshine]

Peg started hers. I wish you luck and success. Please let us know how you're doing

[agate]

If those on Ocrevus want to share this information, I'd be interested in knowing how the treatment made you feel. Did you notice any changes--odd sensations, new symptoms, old symptoms that vanished or got somewhat better?

[Virginia]

If those on Ocrevus want to share this information, I'd be interested in knowing how the treatment made you feel. Did you notice any changes--odd sensations, new symptoms, old symptoms that vanished or got somewhat better?

I am with Agate on this. If you want to share any information re infusion I would be interested in knowing.

[ssusan]

Pretty confident that it will stop progression. I would be so happy if I regain some function, perhaps newest sx. I'll keep you guys posted. I've been on a consistent slide for a while.

[Sunshine]

Am sorry to hear you've been sliding. I really hope Ocrevus will benefit you. Does your doc think you might regain what you've lost in your latest symptom?

[Pegakafarmgirl]

good luck ssusan,, my firs t infusion was July 5th >>half a dose. I go in the 19th for the other half,,

as far as I can tell,, nothing has changed, maybe after this infusion, I can tell if there is a change,,we'll see

5 hours I was in,, nurses checked blood pressure every 15 minutes,,

[Howie]

Peg, did you take a book, or at least have TV to watch? 5 hours is a long time, but I guess that's the way it has to be done. Good luck with the second one.

[agate]

Hope the Ocrevus people don't mind all of the questions but did you have to lie in bed the whole time? Or could you sit up? Was there anyone else in the room to talk to?

Checking your BP every 15 minutes--that sounds as if they were being pretty careful.

[Pegakafarmgirl]

I had TV,, and brought a book,, the nurses, came in to visit,, and yes I was in a recliner,, and they wanted me to be as still as possible,, it was doable

[Lazarus]

good luck ssusan,, my firs t infusion was July 5th >>half a dose. I go in the 19th for the other half,,

as far as I can tell,, nothing has changed, maybe after this infusion, I can tell if there is a change,,we'll see

5 hours I was in,, nurses checked blood pressure every 15 minutes,,

Hi Peg,
I wanted to say that this is not a medicine that will give you an immediate fix. I mean, if you have a headache and take an aspirin the headache goes away. You are aware the headache is gone. With this you may have to be patient. Benefits may be subtle and you will miss them if you are looking for big results. Just a guess but I thought it worth mentioning.

I have been taking it (rituxan) for several years and there are some things happening now that are improvements I never expected. Yet I am having some newish problems....serious ones that need attention...

So you see, we do not have a miracle yet. But rituxan has been pretty good for giving me back real life.
Best of luck.

[Sunshine]

Laz, will your ur insurance force you off Rituxan and onto Ocrevus?

[Lazarus]

Laz, will your ur insurance force you off Rituxan and onto Ocrevus?

I do not think so. I have been using off label chemo for at least 17 years. My previous cancer is used to my advantage to argue for them.

[agate]

Being as still as possible for 5 hours? A person might need the bathroom a couple of times in the 5 hours. Maybe they let you take a short break now and then...?