Ocrevus infusion a few months later

Ocrevus infusion a few months later

I’ve been asked this question quite a number of times so I thought I’d address this in my blog. I’m asked, do you feel any better since you’ve been on Ocrevus? Where I’d love to give a wonderful answer here, the answer is NO. however it’s also very important to answer, I also don’t feel worse. When I was on Tysabri, I was still feeling worse month to month. That’s why we made the switch originally to Rituxan, which is Ocrevus’ sister. I was on Rituxan for a year and a half before I switched to Ocrevus for insurance reasons. Rituxan wasn’t covered, and Ocrevus was. Don’t get me started on that issue. You can look up that blog because that was the whole ridiculous situation. Rituxan cost less than Ocrevus and is basically the same drug with a long usage history.

Ocrevus is given once every six months. After the little bumps in the road from possible infusion side effects, you really don’t feel anything from the drug. The side effects are mostly from the steroids that you have to take not even the Ocrevus. It’s not like you constantly have periods or days where your sluggish or feel flulike symptoms like with some of the other drugs on the MS market. There is a longer stretch of time before you feel anything from the effects of the infusion. Again the infusion is not really the medicine that causes the side effects, at least not for me. That’s definitely one of the benefits. There are no down days from your medicine. I had many of those taking Avonex, Betaseron, or Copaxone.

My neurologist would say how do you know it’s not working. She wouldn’t be wrong. I don’t feel better month to month but I don’t feel worse month the month. Is that improvement? Is that the goal? If that’s the case then Ocrevus is working. I know I haven’t shown any activity on my MRI in a couple years. That includes when I’ve been on the Rituxan. I don’t expect there to be, that’s why I’m taking these drugs. The MRIs, they don’t show secondary progression. That’s what Ocrevus, or any of the other MS drugs, do not stop. So the question whether Ocrevus is helping, is subject to a personal opinion. To this I can say I’ve gotten worse over the last couple years, but I’m still on my feet and fighting through. To me that’s a blessing and I’m grateful. If I was still on the other drugs I don’t think that would be the case. Where I do continue to decline on a month-to-month basis, I don’t feel it as much on a month-to-month basis. I think that’s the main difference being on Ocrevus.

8 thoughts on “Ocrevus infusion a few months later

  1. My dilemma is the same. I have been on a slow, gradual decline for the last couple years. I can’t be certain Ocreus is working, either. It certainly is a catch 22. My concern with the research is that how can you use yourself as a test study against yourself? Since we are all individual. It’s one of the many frustrating parts of this disease! So really it all comes down attitude! And you have a great one! ???

    1. You’re just like me in so many ways. It’s frustrating. I actually hate that question. How do you answer that? I can measure it more in years now luckily than months. It used to be months so I guess somethings working

  2. I never know if something I am taking is helping me until I stop taking it. If things go south, then I know it helps, and that has happened on a few occasions. I switched from cytoxan to Ocrevus last year. I feel punky two days after the infusion but that is it

    1. Me too maybe a little longer depends on how my body decides to react to steroids. I can’t say what helps anymore. I think the high dose biotin helps

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