Ocrevous scheduled Yay!!!

[agate]

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I would say that I see no improvement on Rituxan, but my MRIs are stable. I have been on it about two years. It beats having to have more frequent treatments, such as Avonex and Tysabri. Oh, and I did get shingles a year ago, which I think was due to being immunosuppressed on Rituxan. I am terrified of getting it again.

The stable MRIs are probably taken as a sign that the Rituxan is working even if you're not feeling any better.

When I was on Copaxone, I'd had a baseline MRI and then I had a later one to see how I was doing on the Copaxone. When no new lesions showed up, the neuro said that that indicated that the Copaxone was working. I hadn't noticed any improvement in my symptoms or in how I felt in general.

[Ikoiko]

The great thing about Rituxan, besides its efficacy, is no side effects.

[ssusan]

Peg, I had to get a second neurologist who Has prívleges at hospitals in my region

[ssusan]

Peg, I had to find a neurologist in our region of Massachusetts who has privileges at local hospitals. It took calling a lot of offices to find somebody. It is very worth it, so I don’t have to travel an hour and a half.

[Sunshine]

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I would say that I see no improvement on Rituxan, but my MRIs are stable. I have been on it about two years. It beats having to have more frequent treatments, such as Avonex and Tysabri. Oh, and I did get shingles a year ago, which I think was due to being immunosuppressed on Rituxan. I am terrified of getting it again.

There is a new more effective vaccine called Shingrix. The CDC rec it even if you had the older one already.

[Lazarus]

Yes Agate. That is the schedule and I think it is what I wrote in my response above.

[Lazarus]

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Linda, I don't know about Rituxan but for Ocrevus isn't it 2 infusions 2 weeks apart at first, then 1 infusion every 6 months after that? I got this from the Ocrevus Webpage:

Yes Agate, that is the standard dosing schedule that nearly everyone follows.

[Lazarus]

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My Rituxan dosing has switched to one infusion every six months. It used to be a set of two infusions every six months.

Intriguing. Do you know the dose you get? Can you explain why this change was made? Interesting.

[Ikoiko]

I see you are in MA. I go to Beth Israel in Boston. I get 1000mg in one dose instead of splitting it into two 500mg doses. My neuro said that there is evidence that it works better this way.

[Lazarus]

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I see you are in MA. I go to Beth Israel in Boston. I get 1000mg in one dose instead of splitting it into two 500mg doses. My neuro said that there is evidence that it works better this way.

This is really interesting to me. I have been on rituxan for about 4 years. Rituxan and Ocrevus are the same and I have been wondering about asking several dosing questions. Can you tell me who your Boston doc is? I am in western MA. Friends of mine go to UMass Worcester.

Thanks for any info. You have

Did you ask what your doc meant by “works better”. I have been wondering if people ever get more than the amount received in the standard dosage protocol. Higher dosing or more frequent dosing...?? That is my focus right now.