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    tysabri question

    with my ongoing rollercoaster, not knowing if it's Ty or something else I wanted know if there is any specific danger in postponing an infusion a week or two? Will it put me at risk to have other relapse? And if I were to discontinue Ty, how does that work? Could I go on another medication right away? I have had 6 infusions thus far.

    #2
    There are some people that get their Infusion every 6-8 weeks rather than every 4 weeks due to JCV titer and length of time on the drug. So it shouldn't put you at relapse risk. I have missed at times due to illness or weather. I do notice increase in fatigue though.

    If you go off Tysabri, there is a wash out period before you can start a new medication. I believe 3 months, but not positive.

    You should discuss with your neuro though since everyone's history is different.
    Kathy
    DX 01/06, currently on Tysabri

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      #3
      Thank you. I really think I'm going to put it off till next week. I'm scheduled tomorrow but I feel better each day. My symptoms are much less intense. Right after infusion they are at their worse. I am very conflicted.

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        #4
        Originally posted by shel67 View Post
        Thank you. I really think I'm going to put it off till next week. I'm scheduled tomorrow but I feel better each day. My symptoms are much less intense. Right after infusion they are at their worse. I am very conflicted.
        I am the opposite, I feel the best the second day after Infusion to the week before the next. Since you feel worse and feel better further out from your infusion, I would definitely have a conversation with your neuro. Maybe you can agree on a timetable if you continue to feel this way. While Ty is effective, it could be that it is not the right drug for you.

        Also, does your neuro do frequent blood work to make sure nothing else amiss? If no, you may want your blood checked just to double check.
        Kathy
        DX 01/06, currently on Tysabri

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          #5
          All he doctor said was I'm opposite. But this needs to be examined.

          I postponed it till next week. I'm really curious to see what happens. I felt okay yesterday, my regular MS balance was good. The difference is night and day between how I feel. It's that weird heavy head swaying. The last month was unbearable. All my symptoms get intense.

          Trying to retrace this; the first infusion, I felt the swaying 3 days after the infusion and that lasted till the 2nd week. The next 3 months the same but the swaying not as bad.

          I remember November's infusion month being kinda steady the whole month, but I have that improved feeling the last two weeks. December, sort of the same.

          But these last two months were bad. What's weird is after the January's infusion, 3 days later I felt the best I felt since this MS mess began. I thought that was it, like in September, I thought there was finally a light at the end of this tunnel. I was wrong...again.

          By that Sunday I felt like I had another attack. That lasted 2 weeks and a couple days. The day of menstrual cycle, I felt better.

          Then I felt better again and the day of February's infusion, the swaying, it was back and BAD. That swaying was so intense I can't do that again. It lasted 2 weeks.

          Here is what is very odd and curious; the day I began my cycle, the swaying stopped again. This is is how it has been since September and even before that.

          I felt better the day of my cycle each month since September, before I began Tysabari. I really want to go the full 2 weeks before another infusion just to see if the swaying comes back with out the infusion. If it's not the infusion I need to know. I do not want to stop if it is working.

          Over the last 5 years Every MS flare and/or activity I have had has revolved around my cycle, so much so, I was told my MS symptoms were menopause.

          This cycle was different, lighter and shorter and the swaying was worse. Last time I had a shorter lighter cycle, I had an attack and that is what led to diagnosis of MS. There is a link, I know there is.

          Depending on how I feel. I'll try to see if I can put the infusion off another week just to be 100% sure it's not the infusion.

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            #6
            Originally posted by shel67 View Post
            Over the last 5 years Every MS flare and/or activity I have had has revolved around my cycle, so much so, I was told my MS symptoms were menopause.
            Hormone levels are well known for affecting inflammation and autoimmune conditions. It might be worth considering going on one of the medications that reduces the number of menstrual cycles per year or eliminates them altogether. Those meds have side effects of their own, so all of the trade-offs will have to be weighed. But it could be worth talking to your gynecologist about.

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