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    tysabri?

    I am going for my 4th Tysabri infusion on Thursday at MS Clinic at Rush. This is my first DMD drug I have taken.

    Prior to treatment I was JCV positive 1.51 tilter and am scheduled to be JCV tested again at 6 month appointment which is December.

    The last 3 weeks I have been experiencing a constant headache (don't ever have headaches as a rule). I wake up with it and go to sleep with it. Had on on/off fever flu-like feeling most of last week.

    I am generally not an alarmist or someone that wishes to have unnecessary and expensive testing but I am wondering if I should ask to have blood test early, if for nothing other than peace of mind. I travel 2 hrs for my appointments and would prefer to not have to go back and forth.

    What would you do?

    #2
    I would call and discuss with neuro. I believe PML is more neurologically based and not fever/chills and headache (I just replied to PML thread started by Tortis). That being said, your neuro should be aware as if you are sick, they usually don't want you to be infused until healthy. I have missed several infusions over the last 3 years due to illness. Additionally, while uncommon, there are several other illnesses/conditions that Tysabri can be linked to. So the neuro may want a full blood panel to check WBC, liver panel, etc.. in addition to JCV titer.

    Let us know how you make out.
    Kathy
    DX 01/06, currently on Tysabri

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      #3
      Small MSWorld

      Hi Frosty!

      i go to Rush, as well! I was diagnosed in April and Stefoski is my doctor. Are you happy with the clinic?

      Sorry to hear about your issues with Tysabri. In your shoes I would have the tests done. I am on Rebif and they said they usually test WBC every 3 months. I asked for once a month, for my peace of mind, and they are allowing it. I hope you feel better soon and Tysabri works out for you!

      dpl
      "It matters not how strait the gate,
      How charged with punishments the scroll,
      I am the master of my fate,
      I am the captain of my soul." ˜William Ernest Henley

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        #4
        thank you for your replies

        I am very happy with Rush and a patient of Dr. Balakanov.

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          #5
          HI Frosty123, I totally agree with pennstator and you should definitely call and discus with your nuero. I am seeing my nuero tomorrow about some of the same issues and my 4th infusion would be at the end of the month. Good Luck!
          PEACE
          Tortis

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