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how long have you been on ty?

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    how long have you been on ty?

    i was talking to my neuro, who suggested ty be my forever med. yay ok no way!

    we made a new plan, mri in 7 mos to see if any changes, and if ms is kicked into it's corner again going off and going on lighter med.

    anyone else tried this?
    Jen Dx'd 5/11
    "Live each day as if it were your last"

    #2
    I just had my 57th infusion, and I have no plans of going off. Like my neurologist says, "If it ain't broke, don't fix it."

    I read the posts on the medications others are taking, and I am so thankful I have none, and I do mean NONE, of the side effects from which others suffer. Day 1 is just like day 28. My MRI's have been stable from the time I started Tysabri, and my brain volume has remained constant.

    Yes, I continue to progress, albeit slowly, but I think much of that is due to the normal aging process (almost 63 here). My neurologist has suggested as much. Tysabri hasn't been out even 10 years yet, and who knows what new information lies around the corner.

    Go off Ty? No way... That's not a risk I want to take, IMHO.

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      #3
      I started Tysabri 10/06 , so I have been on it 8 years. I am soooo grateful to this med ! My MRIs have been stable, progression HALTED and my QOL improved. In the last year I went from jcv- to indeterminate and a few months ago I switched from infusions every 4 weeks to 6.

      I was dx'd 26 years ago at age 39, I use a cane and scooter because I have foot drop and my R leg doesn't work well. Thank G-d this is my only major problem and I know it is because of Ty..as I stated earlier, I am sooo grateful to this med

      Until something better comes along I hope I can stay on Tysabri
      Linda

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        #4
        Sunshine008

        You have had some severe reactions to the TY infusion. If my throat ever closes during the infusion like yours just did...it will certainly be my very last infusion.

        As far as myself...its been a little over a year, and I want to stay on it as long as possible. I dont consider it my "forever" drug. Just a placeholder until something else comes along.
        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

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          #5
          Such good stuff, love it! it really does seem to work wonders for so many, that's why i'm sticking in for at least 6 mos. and than we'll run an mri.

          i just can't hack the crazy side effects. if anyone new is reading this, these side effects i go through aren't the norm at all my neuro said. I'm just super med sensitive.
          Jen Dx'd 5/11
          "Live each day as if it were your last"

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            #6
            Ty

            I've been on Tysabri going on 7 years. I was on Avonex before that but got pregnant and my neuro at that time didn't treat the post-baby relapse. I found a new neuro and she started me on Ty.
            I love the Ty but my JCV Titer just keeps increasing. I found out today that it's now up to 3.1. I have been really against stopping the Ty and my Dr. told me I know the risks and it's up to me. She does an MRI every 6 months.
            It's getting to the point that I'm getting afraid to not switch meds. The problem is that there IS nothing better than the Ty! On the other hand, the thought of contracting PML is some scary stuff. I have 2 kids, a 16 year old and a 7 year old. Our 16 y.o. is old enough to deal with things if I did end up with PML but our 7 year old is NOT.

            I'm trying to decide what to do. I'm afraid that if I stop the Ty I'm just going to have a huge relapse. This is some scary stuff, I see my neuro after Christmas. She has talked about the oral treatments, I'm not interested in those. I think I want to talk to her about the newest injectable.
            How in the world do you go from the best treatment they have to something else that isn't nearly as effective? It's enough to make you scream!


            Jenn
            Jenn-- Proud mom to 2 boys. The teen who drives me up the wall and the 1st Grader who makes me laugh every day.

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              #7
              sunshine, what side effects do you have? Like you I'm very sensitive to meds. I had them slow the infusion down to 2 hours instead of 1 hour. It made a HUGE difference. Also the longer I was on the drug the more the side effects improved.

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                #8
                Hi,

                I have insomnia leading up to next infusion, usually week and a half it begins. I have been sick after each infusion with upper respiratory, one I have now didn't respond to meds so heading bk to dr again. After infusion tired for about week or so, leg pain, ears ringing, flushing on and off through the month and tremendous weight gain. Almost like swelling of my stomach, horrible had to go buy new jeans because i'm not fitting into anything.

                I haven't seen really one plus in staying on it,yet i've tried so many other ms meds that didnt' do anything either. so i'm at the point where i'm ready to pull all the meds again and do it my own way. how about you?
                Jen Dx'd 5/11
                "Live each day as if it were your last"

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