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Tysabri for spms?

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    #1

    Tysabri for spms?

    I have SPMS and am JC+. I am starting a two year trial in 4 days to see if Tysabri will slow the progression of disabilities in people with Progressive MS. Through this trial, I will have an MRI every 6 months. I have already had one to start the trial and will have another 3 months after the trial. I am nervous but as I was diagnosed at the age of 52, I decided I would take part I any trial my Dr. suggested.

    By the time this trial is over, I will be 61 and will have been in 2 drug trials, 1 MRI trial and 4 sub-trials. All I am hoping for is that all this is doing some good as far as finding a cure. I will keep updating this site as I go through this .


    I only wish this was an old person's disease. Breaks my heart when young people are afflicted.
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    #2
    I too have SPMS, am JC+, and am 52. I have had 10 infusions. Wow, I can't believe it's been so many. I too had an MRI after 6 mos. on Tysabri, but at my own request. The MRI showed no change and no enhanced lesions. As you may know, that's good but maybe not great, since with SPMS lesions no longer enhance. The lesions are just there. After 4 or 5 infusions, I started to feel slightly more energy, but nothing much else to speak of, and the improved energy now seems to have dissipated. My Rx history puts me at risk of PML, so I don't know whether I'll continue for the 24-mos. the Neuro said he was willing to permit me to take. I wait with longing for good news from the stem cell front or for JC virus treatment, and I still intend to push the Neuro to get me an LP to test for presence of JC in the fluid. And an LP is up there w/ MRI or Root Canal on things I hate to do list. Bottom line, Tysabri appears to be holding things steady, but the risk makes that seem a slight comfort.

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      #3
      Are you part of ASCEND study?

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        #4
        Since I was dx 1988 I am pretty sure I am spms. I have had 66 infusions, Tysabri has been (is) a success for me... better balance, more energy, less fatigue-my QOL is good
        Linda

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          #5
          I started the trial

          I am taking part in the ASCEND trial. Yesterday was a long day. I started at 8:30 seeing my Neuro. I did all the tests to establish a baseline. Had my 1st infusion at 1:30 and I got out of the hospital around 3:30. Jmped in my truck and drove the hour back home. Today, I was feeling really good till the afternoon and had a 3 hour nap. Otherwise, nothing too exciting going on. Still have MS

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            #6
            Third infusion tomorrow

            Sorry I haven't been posting much. It is still too early to tell anything. On May 12th, I lost my wife. She was murdered by a youth in the group home where she works. I am still having a real hard time and my MS has been causing lots of discomfort. My legs are really stiff, can't sleep without a sleeping pill.

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              #7
              I am so sorry to hear that you've lost your wife. The manner in which she was taken from you defies description!

              I'm 52 and was diagnosed at 51 with SPMS. I am JCV -. At my neuro's suggestion I started Tysabri on November of last year. I will have my 8th infusion this Saturday.

              MRI's taken in April showed no changes relative to studies done in August 2011. I feel good with only minor sx changes and no relapses. Submitted FYI.

              Kyle
              At weddings, my Aunts would poke me in the ribs and cackle "You're next!". They stopped when I started doing the same to them at funerals. Dave Barry

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                #8
                Originally posted by korgc35 View Post
                Sorry I haven't been posting much. It is still too early to tell anything. On May 12th, I lost my wife. She was murdered by a youth in the group home where she works. I am still having a real hard time and my MS has been causing lots of discomfort. My legs are really stiff, can't sleep without a sleeping pill.
                My deepest sympathy on the lost of your wife. So tragic and unthinkable. I can't imagine the pain and heart heart your going through between your loss and disease process.

                I am on my fourth Ty treatment and I was falling for 3 months before starting and since my first treatment I have good balance and my spatial disorientation is gone. I was thrilled as I was getting beat up falling. Other than that I haven't seen much difference in symptoms. Read a great article that reminded me that often MS drug treatment is an investment in our future because it is proposed to stop progression of disease and not cure necessarily remove our symptoms we now have. Good luck and I will keep you in my prayers.

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