Monday, July 24, 2017

One Month Post Infusion

Not much change on this end after the last infusion.  I was in the hospital one week after the infusion to help battle a relapse, but as of today, I'm pretty much back to where I started.  I am battling terrible fatigue, and am walking very slow today.  My balance is way off, and I'm having trouble walking without a cane.  I wish there was better news, but it doesn't look like Ocrevus is stopping the progression of MS with me.  :(

2 comments:

  1. Hi, Mike!

    I'm very glad to have found your blog. I, too, am on ocrelizumab and have had similar results. I can relate to your comment about feeling you're back to where you started after being on the medication for a while. I've been noticing the same symptoms in myself lately (fatigue and slow walking; not walking well without a cane) and it makes me question why I ever started this medication.

    I was given my first infusions as part of the EAP toward the end of the PPMS study back in late March. I think I had my second infusion in the middle of April and basically, everything's been downhill from there. I'm questioning whether to get my next infusion in September as a result. I haven't had another MRI to know if I've had any changes but I feel like my quality of life is so much worse that it's not worth continuing on it, whether it helps stop me from progressing or not.


    I appreciate you putting your info out there to help others like us and I hope being on the drug will bring youpositive results on down the line.

    Roberta K.

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  2. I agree with you two. I had first infusiin 2 days ago and my walking is worse than its ever been. My left foot is constantly dragging from the time I get uo to take my son to school to the time I go to bed. It only would drag occasionally before the infusion. Its a shame because I was extremely excited to start this med. Now I just don't know.

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