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Sensitive to dose extension?

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    Sensitive to dose extension?

    Hi all,

    Due to holiday schedules and insurance rollover in New year, my Ty has been pushed out one extra week. I am really feeling it. I am sure the Holiday rush is exaggerating it this month as well.

    But it started me thinking. I am still fortunate to be JCV negative after 76 infusions. So I still go every 4 weeks.

    When I first started, didn't feel anything. Then I started to feel it a few days before. Now most months, I feel it a week out. Fatigue increases, so fatigue related symptoms increase/appear. My husband and close friends are tuned into my infusion schedule just by my behavior!!! As fellow Ty users have said, I start "jonesing" for Ty.

    For people who had to extend schedule, did you notice any changes? Were you sensitive to it before and did you eventually adjust? My biggest fear if I turn positive is feeling crappy for weeks on end, walking into walls, appearing drunk, tripping, dropping everything, conversation challenged, etc...
    Kathy
    DX 01/06, currently on Tysabri

    #2
    I have extended my infusions from every 28 days to every 49. However, it took me 2 years to get there, and I did it gradually by adding 2 days to each infusion. I’ve never noticed any difference, but then I was only jonesing for my first 6 infusions. However, since I’ve been on my new schedule I feel like I have my life back. No regrets!

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      #3
      I don't really notice much when it is getting close to time. I actually missed about 3 infusions in 2016 due to losing my job and taking a while to get insurance.
      I had the Obamacare call center flabbergasted. I live in one state but my neurologist is in another state. The neuros in my state that are the better ones are a four or five hour drive away. I went to them for a while, but I couldn't deal with eight plus hours on the road one day every four weeks.

      My wife said when I was going up there that she could tell when it was getting close to time. She said it was like my my "monthly."

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