Ocrevus at four months

[PositiveMS]

Wow. I just wrote a nice long post about my Ocrevus experience and it got erased! Here I go again, but it will be shorter this time

It has been almost four months since I've been on ocrevus. I had an MRI before starting it, and I was supposed to get a follow up MRI at 6 months. The paperwork got mixed up and I went last week for an MRI. My clinic was surprised to received my results, and they told me it was a little early, but that they confirmed that there absolutely no changes to my brain or spinal cord, so that was great news It's always scary to start a new med, but in this case it was not a bad decision.

I feel good altogether. Right after the first two half infusions, I felt great, then the rest of the three months were a bit of a roller coaster. I'd feel super energetic one day then shaky for a few days, but it did level off nicely in the end. My clinic nurse said this was normal as I was just adjusting to a new med and coming off another one. Now at almost 4 months there are not many ups and downs.

My stamina has greatly increased and I am a lot stronger. These things happened fairly gradually. I used to be done for after going swimming, but the other day I went swimming, went to the grocery store and walked home with my walker full of groceries and still had lots of energy left for cleaning. That is a definitle improvement. I also went on an epic shopping a few weeks ago and went to four large stores on the same day. I never used to be able to do that!

I am still spastic in the legs, but it is the same every day. No more wild fluctuations, so that is also good.

One downside is that I had a cold at the end of May and I kept going to work and doing all my activities like I usually do, but it turned into pneumonia!! My neurologist
said that it was almost definitely related to the depletion of B cells by Ocrevus. Ok, that was a bit scary, but he said if i start to get a cold, I just need to take it easy and take care of it. I will do that for sure! I've never had pneumonia before, and it got cleared up quickly after a short does of antibiotics, but I'd rather not get it again, so I will stay as healthy and rested as possible.

My second infusion in at the end of September, so I am eager to see what happens after that one. I am full of hope for the future.

Oh, and one more thing, my bladder is doing SO much better on this med. I am no longer ruled by it. I go out and drink what I want, and I find I can hold it for a lot
longer before I need to go. That in itself makes it worth it!!

[dlsal]

Had my third injection today

I had ny third injection today and I’m thinking that spending the entire day in an infusion chair may not be worth it. I honestly feel no difference. I know everybody says “it’s only twice a year” but a 6 hour infusion is brutal! I have an appointment to see my neurologist soon and we’ll discuss it. I’m still hoping to feel better.

[oceanpride]

Hello positive MS. Thanks for the update! I’ve been waiting anxiously for it! That’s a really great report. I am noticing all the same things. I feel a little guilty when I read from those who don’t do so well on it. It’s good though that everyone shares their experience, good or bad or indifferent. It’s really good to know.

[PositiveMS]

Hi Oceanpride,

You are right that not everyone experiences the same things with any given drug. I was on Copaxone for a year and had three large relapses on it, and i felt terrible the whole time. I have an aunt who has been on Copaxone for nearly 20 years and it works fine for her. Go figure. I'm very glad you are seeing some benefit though! i remember when you didn't think you'd even get to try it.
I think it's a trial and error game for people to find what works for them. I played the game too, and Ocrevus is the best for me of what's available right now.

Next goal.....remyelination, although all I can do there is wait MS has taught me be very very patient because there is SO much waiting for things.