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Going off tysabri

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    #1

    Going off tysabri

    My neuro is uncomfortable with my issues surrounding tysabri infusions. My BP either goes up (mainly) or goes down following the infusion. I almost always develope a migraine or headache following the infusion - despite taking tylenol, zofran and extra IV fluids during the infusion. So, she wants me to switch. I am of course terrified of switching, considering I have been on ty for nearly 3 years and been pretty stable.

    I have two questions really - Has anyone else had BP issues/headache with ty?

    When you have gone off ty did you suffer a rebound? Thank you!
    Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
    ~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~
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    #2
    I get labile blood pressure which just means unstable, it can be high or low. I also used to get headaches. My neurologist started having them run my infusion over 2 hours instead of 1 and it made a world of difference. It was making me dizzy and itchy too so that all stopped too. Except the itching. I still itch. I just have to take a ton of Benadryl for the 4 days following the infusion.

    Hope you can do something not to stop Ty. Try the elongated infusion time. They can run it up to 4 hours. They can also give fluid with it.

    I get that too.

    Take care and good luck
    Lisa
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    Comment

      #3
      Thank you Lisa. I really appreciate your advice. I took home samples of aubigo...but ever since going I have felt worse and worse about switching. Prior to ty my MS was really aggressive. It has been much nicer since ty. Not perfect but fairly stable.

      I just sent her a message asking to try a slower infusion rate first before switching meds. I have to do a slower rate for solumedrol so it really could work. If she says no i really dont think i am comfortable switching right now.

      Again...thank you!
      Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
      ~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~

      Comment

        #4
        Hi salamandertom,

        You asked if others taking Ty had BP/headache issues.

        Yes, according to this information, those issues are common: http://www.ema.europa.eu/docs/en_GB/...C500044686.pdf

        As consumers (we pay the bills) of healthcare our choices should play an important part in all treatment decisions, IMO.

        Wishing you the best.

        Comment

          #5
          Hello, yes, I have had headaches after my infusion. Sometimes that evening, sometimes the next morning. It feels like a horrible hangover. I did talk to my doctor about it and he suggested that I ask for my infusion to be drawn out longer, so that the meds would be infused over two hours instead of one. He also suggested that I drink more fluids in advance and throughout the day. It's worth a shot.

          Comment

            #6
            I got headaches too. Hydration was the factor for me. I drink 64 ounces of water the day before and 32 ounces the morning of.

            No more headaches.

            I also have drug-induced Anemia from the TY. It can cause blood pressure to go whacky. For me the first symptom was unstable heart rate and GI Symptoms. It can be tricky for docs to sometimes find the Anemia. Ask your doc for a complete blood Workup to specifically include blood Ferritin Levels.

            Drug Induced Anemia is not fun, but it is treatable. I take Liquid Ferritin Sulfate every day.

            Hope you can stay on the TY.
            Katie
            "Yep, I have MS, and it does have Me!"
            "My MS is a Journey for One."
            Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

            Comment

              #7
              Interesting Katie. I have always suffered from periodic anemia my whole life so that could be an issue. My hemoglobin is okay but I don't know my ferritin level. I will mention it to her. Thank you.
              Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
              ~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~

              Comment

                #8
                She is letting me try infusing over two hours!! I am so relieved. Thanks for the reminder that I am my own best advocate!!!
                Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
                ~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~

                Comment

                  #9
                  Hi

                  i'm new to tysabri, only had my 2nd infusion today..yet i get the migraine thing towards end, and also the bp is lower...so i stay there for a bit, eat lunch and than it goes within acceptable range, still lower than normal.

                  Have they tried giving you an iv push of benadryl, as opposed to you taking it by pill? They did that with him today, also gave me prevacid, and another allergy med via iv, and also hydrated me with two bags of fluid. They can also stop the ty drip inbetween, hydrate more, than go back.

                  my throat closes with each infusion, yet i've decided to stay on it. it closed again today yet we ran a line of steriods 125mg and it calmed it. you may want to ask about that also. it seems like the premedicating is super important prior to infusion.

                  good luck!!! hope something i rambled on about helps you!
                  Jen Dx'd 5/11
                  "Live each day as if it were your last"

                  Comment

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