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stumbler
4 months ago

Hi @diagnosedat33 and welcome.

You won’t find many veterans of Ocrevus as it hasn’t been around that long. But, you can locate the previous conversations on this drug, by selecting the Ocrevus tag that has been automatically added to the bottom of your post above.


vixen
4 months ago

Hi @diagnosedat33, that’s right, it’s relatively new to the world. But early indicators seem really, really positive, unlike many other DMD experiences. Here’s hoping…..


diagnosedat33
4 months ago

Thanks for the input! As I have MS for 26 years now it has erupted to SPMS. Here’s hoping Ocrevus holds the progression. I had worked full time until recently. It was a good ride. I have hopes to apply for SSD. Any thoughts?


greg_abraham
4 months ago

Just had my first full dose last week . Was sick as a dog . All weekend


dominics
4 months ago

@greg_abraham

Out of interest, what was your pre-infusion workup?

Am asking because I started it the other day and I had to have had a massive amount of pre-tests, and then on the day pretty high doses of anti-hisamine, followed by steroids then the infusion.

It is started slowly, vitals taken every 15 min and assuming things are ok then the dose is slowly increased.

The entire process took about 6h.

Hope you feel better soon
Best,

Dominic


karen51
4 months ago

I have had two/three infusions – depending on how you count the first one as two half doses. I noticed that the day of the infusion I am very tired due to the anti-histamines. I had an infusion reaction my first time so they increased the anti-histamine on my next two. I have had no more adverse reactions during the infusion. So, my daughter takes me to the infusion center and sits there with me all day, and then drives me home while I sleep. But about 24-48 hours later I become Superwoman. I have so much energy that I can hardly sleep. It lasts about 3 days. I plan for this now. I have my list of things that I’m going to get done in order to take advantage of the energy boost. Once that wears off, I am back to normal. I have not noticed any other reactions. My neurologist says that my blood work shows that it is stopping my progression. I’m going to stick with it.

@dominics – they draw blood when I arrive at the infusion center but that’s about the only workup I get. I believe that neurologists are watching different markers to see how this is going to work. The infusion nurses always check to see who my ordering doctor is and I have heard them say, “Oh yeah – that doctor wants these tests…” I am there all day – it takes about 6 hours once I arrive there and get started. I get the anti-histamine but not the steroid anymore. The infusion is slowly increased for me too.


dominics
4 months ago

@karen51 – that would explain why, for 3 days afterward, I slept 6h a night and smashed it at the gym!

Looking forward to tomorrow!


maevette_zumek
1 month ago

I am new on here. I just did my second ocrevus dose this February at the va. Feeling stronger everyday!!

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