Ocrevus - Shift.ms

hi there, I am currently on Ocrevus and I have RRMS. I have done one infusion so far and nothing but positive things. Things have stabilized for me and I am awaiting the second infusion.
Hope this helps

laura45

3 months ago

Thank you for the info Mastery!

daybyday

3 months ago

I have RRMS and have also done one dose so far (two starter sessions) a couple of months ago. Things have been good for me since then. I am due blood tests before next setting up the next infusion. Then there may be one year scans, but so far, so good. Here’s hoping this keeps things stable. I went undiagnosed but definitely having relapses for several years, but last year I had one relapse early in the year and then optic neuritis in summer, which led to my confirmed diagnosis. There was enough on my MRIs to warrant treating aggressively in the hopes of stabilizing this.

I have had the greatest affect in my hand, with changed sensation since 2016, then better, then it came back last year, but that feels slightly improved. Maybe with lower inflammation in these months. With this disease, I’ll take subtle improvement over nothing.

tabbycat

1 month ago

Hi folks, my neurologist is suggesting a switch from gylenia to Ocrevus as my symptoms seem to be progressing. The news I have read so far seems positive on this new drug. Has anyone had good or bad experiences? Your thoughts are valuable!

daybyday

1 month ago

I was diagnosed with RRMS last summer after a suspected 7 years untreated and given my scans, my doctor and I decided the decision to begin a DMT. I ultimately decided on Ocrevus and it was approved and started in November. I had only a very minor itch during my starter doses and no other side effects. Since then, I’ve felt good. I’ve had altered sensation in my hand for a while, and it was worse, more numb, and it changed around for a while, going almost completely away for a bit before returning in full last year. At time of diagnosis, I was healing from optic neuritis and this sensation that also crept down to my knee and my big toe on the same side.

After treating, whether coincidentally or not, some time later, a month or two, my hand improved a bit. The sensation is probably there permanently, but it’s not as bad. I can feel things in a way I couldn’t for a while. So I like to believe that maybe the targeted B-cells were still causing some havoc and this gave my nerves a little space to heal just a little.

I had my 3-month blood work to check all my levels and those B-cells came up 0 for me.

As far as effects, I got a flu vaccine in January and I reacted to it. I was tired and sore and had an inflamed, mildly swollen, red, painful spot, for four days. It was my first ever flu vaccine so I don’t know if Ocrevus was the reason, but given that vaccines are supposed to trigger an immune response, I wonder if it lengthened that reaction.

Otherwise, personally, I’ve felt good. Have amped up my care in using hand sanitizer, using disinfectant sprays, and learning not to touch my face as much. Waiting on approval for new MRIs to see how things look now.

waynexxl

1 month ago

I too have been asked to switch from Aubagio to Ocrevus by my doctor. I was initially glad, because the Aubagio seemed to have lost it’s efficacy & I was starting to relapse. As I began my study up on the Ocrevus, I was concerned about a couple of things.
One – there does not seem to be any personalization with the prescription. One infusion every six months for everyone. Is that enough? Is that too much?
Two – what if it doesn’t work? How do you get off of it? With the Aubagio I took some powder a couple/three times a day for two weeks or so and it supposedly left my system.
Three – why are so many people out there saying “release the full study results”? are they not telling us everything?

I’m all for new treatments and a way to feel better, but it seems a bit more scary than I originally thought.

Anyone else or am I just paranoid?

~ wayne

edmontonalberta

1 month ago

@waynexxl

You are not paranoid if they are actually trying to kill you… LOL

Seriously though, they are the experts. If your doctor (who knows you) suggests something – trust him / her until proven otherwise…

daybyday

1 month ago

The infusion is given every six months because that’s the average time it takes for the targeted b-cells to come back. So they give a new dose after six months. To come off of it, you just wait. Around six months, your cells will start to repopulate. Get tests to monitor the cell counts return.

Ocrevus has been tested for years and approval came, but that’s not the end. They continue to do more research on certain related aspects (one they are working on is pregnancy risk and learning about that) and also recruit patients for associated research surveys and discussions to complement the rest.

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