Announcement

Collapse
No announcement yet.

Tysabri and MRI

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
    #1

    Tysabri and MRI

    I've been on Tysabri for 3 years. No side effects. It's doing its job... But I'm supposed to go for an MRI every year. I hate MRI's. Actually I hate any appointment since I don't drive (anymore) so everything is a hassle. But I really don't like MRI's so I always push them off as far as I can get away with.

    Last month I saw my neuro (it's been 2 years since my last MRI). I said to him, I can tell nothing's changed so why bother with a MRI? He said the Tysabri can have other affects on your brain that you're not seeing so it's important to have the MRI. OK... I'll go. Anyone know what he's talking about?

    I figured I'll go but now I think (not positive yet will be soon) that I have breast cancer. Lucky me (not). When it rains it pours. So I want to push off this MRI till this cancer is cleared up but I don't want something going on in my brain meanwhile.

    Anyone know about the importance of an MRI while on tysabri?
    Dx 1/86 at age 23
    Copaxone 1993 - 2011 (except when I was pregnant or nursing)
    Tysabri - 2011 - present
    Tags: None
    #2
    DonnaD,
    He might be talking about monitoring brain volume through the MRI. If you search "Maximizing Brain health in MS" on Youbtube, there is an excellent presentation by Dr. Vollmer from the RMMSC in Colorado. This pretty much explains it.
    I also have to have an MRI yearly, and although it's not my favorite thing, I can tolerate them. I did ask my neurologist at my last one if she was seeing any change in brain volume, and she said she wasn't. Tysabri seems to be the best at maintaining brain volume.

    Comment

      #3
      Originally posted by DonnaD View Post
      Last month I saw my neuro (it's been 2 years since my last MRI). I said to him, I can tell nothing's changed so why bother with a MRI? He said the Tysabri can have other affects on your brain that you're not seeing so it's important to have the MRI. OK... I'll go. Anyone know what he's talking about? ...

      Anyone know about the importance of an MRI while on tysabri?
      The biggest reason is the risk of developing progressive multifocal leukoencephalopathy (PML), a viral infection of the brain, that usually leads to severe disability and sometimes death.

      http://www.tysabri.com/about/side-effects

      http://www.tysabri.com/about/safety

      http://www.nationalmssociety.org/Tre...Tysabri-%C2%AE

      Please get your MRI.
      Kimba

      “When you change the way you look at things, the things you look at change.” ― Max Planck

      Comment

        #4
        Originally posted by Kimba22 View Post
        The biggest reason is the risk of developing progressive multifocal leukoencephalopathy (PML), a viral infection of the brain, that usually leads to severe disability and sometimes death.
        But wasn't the the JC virus causing it. I'm negative for that
        Dx 1/86 at age 23
        Copaxone 1993 - 2011 (except when I was pregnant or nursing)
        Tysabri - 2011 - present

        Comment

          #5
          Originally posted by DonnaD View Post
          But wasn't the the JC virus causing it. I'm negative for that
          You can still covert to positive at any time, after coming into contact with the JC virus. Annually, there is a 2 - 3% seroconversion rate. There's also a 2.5 % possibility of a false-negative result. Even if you tested negative for JCV antibodies, you could still be at risk of developing PML. (All reasons why you should be restested every 6 months.) The virus can be detected on an MRI 2 - 3 months before having symptoms.

          http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3926344/

          If you were to become JCV positive, the risk factor for developing PML increases after two years of treatment.

          Hope this information was helpful.

          Best wishes ,
          Kimba

          “When you change the way you look at things, the things you look at change.” ― Max Planck

          Comment

            #6
            Originally posted by Kimba22 View Post
            If you were to become JCV positive, the risk factor for developing PML increases after two years of treatment.

            Hope this information was helpful.
            I guess it was helpful but now you got me very scared. I can only get an appointment for an MRI in 2 months (2 more tysabri treatments before). I've been taking tysabri for 3 years. The risk is only if I become JCV positive? I did my last JCV test half a year ago (they do it once a year).
            Dx 1/86 at age 23
            Copaxone 1993 - 2011 (except when I was pregnant or nursing)
            Tysabri - 2011 - present

            Comment

              #7
              Originally posted by DonnaD View Post
              I guess it was helpful but now you got me very scared. I can only get an appointment for an MRI in 2 months (2 more tysabri treatments before). I've been taking tysabri for 3 years. The risk is only if I become JCV positive? I did my last JCV test half a year ago (they do it once a year).
              I'm really sorry. You have more than enough to worry about right now.

              The risk factor jumps from <1/1000 to 3/1000 from months 24 - 48.

              Yes, since PML is caused by the JC virus, you'd have to become infected with the the virus to get it.
              Kimba

              “When you change the way you look at things, the things you look at change.” ― Max Planck

              Comment

                #8
                Originally posted by Kimba22 View Post
                I'm really sorry. You have more than enough to worry about right now.

                The risk factor jumps from <1/1000 to 3/1000 from months 24 - 48.

                Yes, since PML is caused by the JC virus, you'd have to become infected with the the virus to get it.
                3/1000 of people who are positive JCV get PML? Well they only test for JCV once a year here and they're very cautious. No one here in Israel took tysabri till they knew the cause of the deaths and how to test for it. No one who's JCV positive takes it (I was always shocked reading about people on this forum who were JCV positive and still taking tysabri)

                I guess I won't worry about 3/1000 since I wasn't JCV positive in the past half a year and no one plans on testing me for it for another half a year anyway.
                Dx 1/86 at age 23
                Copaxone 1993 - 2011 (except when I was pregnant or nursing)
                Tysabri - 2011 - present

                Comment

                  #9
                  Yes it's for the PML risk but it might be that your doctor also wants to see your MS progression (less or more lesions on the brain) to determine whether Tysabri is useful for you.

                  I'm negative as well but my doctors insists on an MRI every 6 months AND a JC check up each 6 months to see if I've turned positive. So they are really careful.

                  Have you discussed Tysabri and your breast cancer with your doctor? Because if you were to receive chemo therapy while being on Tysabri, it increases the chances of getting PML tremendously. So I'm kind of curious what they advise you?

                  Good luck to you, hope you kick that cancer's butt!

                  Comment

                    #10
                    DonnaD-

                    I am very lucky in that I have both an Oncologist who administers my Tysabri and monitors my Anemia and other things and a MS Specialist.

                    They both keep me informed as to what is available and in the pipeline.

                    You are probably not going to escape an MRI...chemo too can cause PML.

                    If this is cancer...and lets hope it isn't., both your Neuro and Oncologist need to be involved with your treatment. There are some chemos that help MS as well. You should only need one drug to tackle both. They should be able together formulate your attack plan as to which type of Chemo is best.

                    I know you having awaiting results to tell your Neuro, but when those results come in and if it is less than desirable...Neuro is the first call I would make.
                    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

                    Comment

                      #11
                      oops! I see I posted about my breast cancer on so many of the forums here. So I'm going to end my part in this thread. Yes, I do have breast cancer, but it 's early . This week I'm having a lumpectomy and then the plan is radiation and hopefully no need for chemo. I ended up pushing the lumpectomy a few weeks so I'm right now waiting to hear from my neuro. He'll then let the breast surgeon anything she has to know for me and he'll tell me if I should continue with the tysabri or whatever to do different.
                      My MRI is scheduled at the end of Feb unless the neuro thinks there a reason to push for an earlier one.

                      Thanks everyone for the help. I'm not continuing in this thread
                      Dx 1/86 at age 23
                      Copaxone 1993 - 2011 (except when I was pregnant or nursing)
                      Tysabri - 2011 - present

                      Comment

                      Previous template Next
                      Working...
                      X