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My experience - Ocrevus infusion #3 (first full 600mg infusion)

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    My experience - Ocrevus infusion #3 (first full 600mg infusion)

    Hi everyone,

    I went for my 3rd infusion last weekend and wanted to share my experience.

    Due to Stanford’s infusion center being labeled as an inpatient (hospital) center*, my insurance wouldn’t approve them for my 3rd infusion.

    Apparently I was ok’d for Stanford for the first two half dose infusions to ensure I had no bad reactions. Since I had tolerated it well, I was referred to a lower cost third party outpatient infusion center this time. Unfortunately they were not as thorough and buttoned down as Stanford was.

    Started at 9:00am. Their staff made the mistake of starting the Ocrevus without premed, they said it wasn’t in the order. I had to ask them to investigate again (hello, it’s in the medication instructions...) and sure enough they came back with all the premeds after I already had the first 15-20 mins of Ocrevus.

    By that time I could feel a little tingle on the top of my tongue (I believe I’ve seen this noted by some others as a low-level infusion side effect.)

    They stopped the infusion, I took the Tylenol, they fed the antihistamine and solumedrol thru the infusion line, and restarted the Ocrevus without wait.

    Fortunately, the tongue tingle went away and I had no other side effects, smooth sailing. Standard increases in infusion rate and I was done, observed, and out of there at 1:30pm. 4.5 hrs total.

    As with my first two half-dose infusions, I had no other after effects. I was able to drive home this time. Did some yoga when I got home. Life is normal.

    My only concern at this point, unrelated to my infusion experience, is staving off a stubborn cold my wife has had for over two weeks. Though she seems to be getting over it, I’m still limiting my exercise routine until it’s behind us.

    Thus far I’ve only picked up slightly increased sinus activity. I want to keep it from becoming a full-fledged cold; maybe I’m being paranoid about it but I recall someone else’s post that their cold turned into pneumonia relatively easily when they didn’t take some rest.

    Hope you all are doing well. Thanks for reading.

    ————

    * I had seen my Neuro (MS specialist) at Stanford the week prior to the infusion, he said to expect a different experience at the 3rd party infusion center - boy was he right - and that he is working to convince the powers that be to reclassify Stanford’s infusion center as outpatient so the costs come down and they can have a complete end-to-end patient care experience...dr visit, labs, infusions etc all at one place and in one day’s visit. He is hopeful it will happen by my next infusion. I hope so, too.

    #2
    Good to hear Mister Man. I’m just a month ahead of you with the infusions. Hopefully your immune system has recovered enough from your last one till this one kicks in to fight through the cold. Keep us posted. I for one am interested. Thanks.
    It was one agains't 2.5million toughest one we ever fought.

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      #3
      Hi MisterMan,
      I'm sorry about the lower cost infusion center and I'm glad they corrected their error fast.

      I hope you are able to fight off that cold and I hope your wife gets better soon.
      God Bless Us All

      Comment


        #4
        Keep us informed on how you're feeling, I'm hoping to be starting Ocrevus soon so I'll take all the info I can get.

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          #5
          Here's information about pretreating to reduce Ocrelizumab reactions:

          https://multiplesclerosisnewstoday.c...study-reports/

          Comment


            #6
            I’m fine

            Hi everyone, thanks for your replies. My wife did get well and I never came down with the cold, fortunately.

            Marco, thanks for that link. An interesting read. I have had minimal infusion reaction if any in all my Ocrevus infusions thus far. I already take ceterezine once daily though that was just one part of their premed modifications. I tend to drink a lot of water and I am at a reasonable BMI. Maybe this is why I tolerate the Ocrevus well but who knows...

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              #7
              I'm a month behind you. March 5th next infusion. Thanks for the update MM. My wife worked at Stanford for 5 years and I'm pretty familiar with the area. I miss the moderate temps.

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