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    Just Skip the MRI?

    Was wondering if anyone here who takes Tysabri does not do the MRIs. Are they mandatory?

    Reason I am asking, I might be adding some "hardware" to my body. I have Gastroparesis and it is doing a number to my body. I am having Botox next week to see if the Pyloric Valve will stay open and relieve all this. If not, I am looking at a temporary feeding tube and Gastric "Pacemaker" . This Gastric Pacemaker is NOT compatible with an MRI.

    Additionally, I have developed heart issues because of the Gastroparesis and might need a pacemaker. They now make pacemakers that are MRI Compatible, but I have reservations about them.

    I am JCV- still and I know that PML can be detected through a LP.

    Anyone not doing MRIs and still taking Tysabri?
    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

    #2
    I saw this post yesterday, and since no one else has answered, I 'll add my two cents. I've been JC- since I started Ty 6 years ago. Since my yearly MRI has been stable, and I've had at least 7, in January, I asked my neurologist if I could skip one. She said Biogen wants 2 MRI's a year when on Tysabri, so she said NO. Drats! Next one will be in August. hope this helps.

    Comment


      #3
      Originally posted by ru4cats View Post
      I saw this post yesterday, and since no one else has answered, I 'll add my two cents. I've been JC- since I started Ty 6 years ago. Since my yearly MRI has been stable, and I've had at least 7, in January, I asked my neurologist if I could skip one. She said Biogen wants 2 MRI's a year when on Tysabri, so she said NO. Drats! Next one will be in August. hope this helps.
      This isn't a requirement of Biogen. My MS Specialist only requires I have one once year. What they DO require is the provider determines whether or not a patient should continue on Tysabri every 6 months. If that includes MRIs every 6 months, then that's your doctor's prerogative. I'm also JCV- and my MS specialist is most concerned about my status changing.

      http://www.fda.gov/downloads/Drugs/D.../ucm288126.pdf


      KatieAgain,

      I'm sorry you might be considering "hardware." I hope the Botox injections help, and you won't need the gastric pacemaker after all. Did you have it done yet? I know the results aren't immediate (have it done elsewhere). I noticed you posted in another thread tonight. Sorry to learn you're in the hospital, and for all you are going through. As far as the cardiac pacemaker, an MRI compatible one might be something you want to consider if you can avoid the gastric pacemaker.

      I've never taken Tysabri without being able to get MRIs. But, my MS Specialist was still willing to prescribe it back in 2009 when I had a pacemaker that was not MRI compatible. I'd tried (and failed) all the drug modifying therapies available at the time, other than Novantrone. (Wouldn't prescribe that one, because of risk of cardiotoxicity.) We also didn't know I was JC virus negative (the blood test to check for JC virus antibodies wasn't available yet.) But, I'm sure the main reason he was still willing to prescribe it back then was because of the 2 year window when the incidence of PML is the lowest.

      Said he'd order CT scans instead of MRIs, but because they weren't as sensitive, weren't as reliable. So, would also order lumbar punctures 3 times a year. Said if results from the LP came back positive for the JC virus, he would order a brain biopsy. That was the difference, so I've learned. It's considered the "gold standard" for diagnosing PML (but only used in rare cases). MRIs serve to strongly support a PML diagnosis (doesn't prove it.) A CT scan doesn't.

      If the thought of a brain biopsy wasn't unsettling enough, he also added something to the effect that because a CT was less accurate at providing the precise location of suspected PML, it might take a few different attempts to get a brain sample by the neurosurgeon. Needless to say, the thought of a neurosurgeon probing around in my brain was not appealing in the least, so declined it at the time. Instead, put it on a back shelf in my mind and tried another drug that he offered. (Wasn't as effective as we'd hoped)

      Fast forward to 2011, and the first MRI compatible pacemaker was FDA approved. I'd just been started on Gilenya (hadn't been out very long), but still wanted Tysabri back in my med arsenal, since my doctor thought it was the most effective. So had the other removed (more complicated than just replacing the pacing unit, since the leads in my heart also had to be removed) and has it replaced MRI compatible one instead. Gilenya turned out to be a disaster for me, and after that smoke cleared, finally went on Tysabri. Wish I'd been able to go on it a long time ago, might have prevented all the damage I know have.

      Diagnosis of progressive multifocal leukoencephalopathy is usually based on these three criteria:

      1.) clinical presentation (although it may still be asymptomatic when first suspected through an MRI)

      2.) the demonstration of suspected PML brain lesions on magnetic resonance imaging AND

      3.) the detection of the JC virus DNA in the cerebrospinal fluid with high sensitive polymerase chain reaction. (Count can be low in 2/3 of Tysabri patients, and up to 1/2 of those results may be only mildly elevated)

      The role of magnetic resonance imaging specifically in natalizumab-associated progressive multifocal leukoencephalopathy is strengthening, and it is gaining importance not only as an irreplaceable diagnostic tool but also as a surveillance and risk stratifying tool in treated patients. While other imaging techniques such as computed tomography lack sensitivity and specificity, magnetic resonance performed with morphological and functional sequences offers clinicians the possibility to early identify the stage of the disease and the emergence of an immune reconstitution inflammatory syndrome (IRIS) after natalizumab blood removal plasmapheresis. http://www.hindawi.com/journals/crira/2013/415873/

      I wish I could share more encouraging news about MRIs while on Tysabri. At least you'll understand now it's all about PML. Don't know if you are familiar at all with Ocrelizumab, but that one is being considered a game changer in RRMS. But won't see it FDA approved at earliest until 2017

      We've missed you and I'm keeping you in my thoughts and prayers.

      ((((Hugs))))
      Kimba

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

      Comment


        #4
        HI Kimba

        I know this is old, but I wanted to ressurect it because in about 60 days a gastric pacemaker is being implanted.

        After discussion with all the Specialists, I am going to remain on Tysabri without MRI cabability. I was tested again last week and am still JCV-. Yea! If I do have a flare that looks like PML, they will do a CT and a LP. And if it is PML, they will take out the stimulator so we can use a MRI Tube.

        Bottomline, there are more and more of these pacemakers and stimulators out there...and people on Tysabri can remain on Tysabri with one as long as their neuro agrees. Key is truly having a good neuro...and I have the best.

        It sure has been a long road.
        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


          #5
          Good luck, Katie! I had to go read exactly what a gastric pacemaker is, but it looks like something that might really help.

          My next infusion will be #82, and I just had another JC virus test. I've honestly lost count on how many tests I've had, but it's at least 10, and I'm still negative. After my 3rd test, my neurologist felt I would stay negative, but I still take the test twice a year. I'll be surprised if you ever seroconvert.

          Good luck.

          Kris

          Comment


            #6
            Katie,
            Good luck No matter what our issues are we need to Trust our GOOD Drs! I'm glad you have a "the best" Dr. I do, too
            Linda

            Comment


              #7
              Thanks Linda and Kris!

              The Cleveland Clinic is doing the Gastric Pacemaker. I had a temporary one week trial where the pacer was outside me attached to wires through the nose into the stomach. It worked. Really excited to get rid of some of the nausea and pain. THe recovery is hard though...about 6-weeks.

              I love Tysabri. GLad I can stay on it.
              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


                #8
                I'm so glad to hear the trial worked!!! I will continue keeping you in my thoughts and prayers. Hope all goes well with the surgery, and the recovery goes better than expected.

                My MS Specialist was great, too, but he passed away (too young ... only 53) unexpectedly last month.
                Kimba

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

                Comment


                  #9
                  KatieAgain --
                  We're wondering how you're doing: http://www.msworld.org/forum/showthr...ain-Are-You-OK
                  It's been awhile since we've heard from you.
                  ~ Faith
                  MSWorld Volunteer -- Moderator since JUN2012
                  (now a Mimibug)

                  Symptoms began in JAN02
                  - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                  - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                  .

                  - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                  - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                  Comment


                    #10
                    Thank you Mamabug!
                    Yes, wondering, hoping KatieAgain is doing well
                    Linda

                    Comment


                      #11
                      Katie posted here this evening:

                      http://www.msworld.org/forum/showthread.php?140801-Katie-Again-Are-You-OK

                      Originally posted by KatieAgain View Post

                      I love ya'll...I really do. ❤❤❤

                      I have been looking here periodically, just not posting...I need to do better.


                      My surgery got bumped. Mainly because my Dad has Cancer so I have had to re prioritize a bit. But I am having surgery at Cleveland Clinic Florida on 12 January. They were close to putting a feeding tube in me, but my gastroparesis got a little better and I was able to put 10 pounds on thanks to Breyers Ice Cream.

                      So, and in less than three weeks...I will have some new "hardware" in me. It could take up to a year for the stomach pacer to work like it should. But, after all the tests, they told me I had an 85% chance of it helping. I will be happy with any little bit of help that I can get.

                      Thanks for thinking about me. Happy Holidays Everyone. May all of us have a really fantastic 2017! 🌷🌷🌷
                      ~ Faith
                      MSWorld Volunteer -- Moderator since JUN2012
                      (now a Mimibug)

                      Symptoms began in JAN02
                      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                      .

                      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                      Comment


                        #12
                        Once again, thank you Mamabug
                        Linda

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