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Questions about Tysabri

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  • Questions about Tysabri

    Hi! I am new to the group so Hello!

    I was diagnosed in '99 with MS than in '05 it was changed to Transverse Myelitis. With new testing it looks like they are back to MS. With that said they want to put me on Tysabri. I haven't been on any medication since '05 so I am getting back in the game.

    What can anyone tell me about Tysabri.

  • #2
    This is the newest medication. You must get it from a clinic, and be followed by a clinic, that is certified by the drug company to provide it (the TOUCH program). While there have been some good reports, it can have some very serious or fatal complications that you must be aware of.

    Have they ruled out any of the other traditional drugs such as Avonex, Copaxone, Rebif or Betaseron? Usually Tysabri is limited to those cases where these drugs do not seem to work, and you should not take any of them in combination.

    On what basis did they decide you actually have MS vs. TM?

    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


    • #3
      Thank you for the reply so quickly!

      I had more than enough MRI's since '99 but my new neurologist not only did the MRI's and blood work but was the first in 9 years to do a spinal tap.

      He gave this diagnosis as:
      MS 340.0
      paraparesis 344.1
      Ataxi 781.3

      I do not understand what that means yet but... I have needed a chair for the last 6 months so this last "hit" was a tough one. At first, ('99 - '05) I was on Avanex and then Betaseron. Regarding Tysabri I have read the information about PML and understand that like all drugs I must weigh that and take my chances.


      • #4
        The numbers behind the diagnosises are just medical coding for insurance and tracking purposes.

        Did your neurologist say anything about brain lesions? Repetitive TM only leaves lesions in the spinal cord.

        Welcome to CareCure Tlbell3.
        Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

        Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.


        • #5
          Tysabri has had a rocky road these past few years, but just this week there were recommendations from the AAN (American Academy of Neurology) regarding this medication. See the links below. When it was first introduced, there was significant excitement, as it does appear to be effective. However, people were distressed to see the complication of PML (progressive multifocal leukoencephalopathy) - basically a degenerative brain condition associated with a viral infection - that was seen to occur in a very small number of patients treated with this medication. However, this is a very rare complication.

          The nurse is correct that it is typically a medicine that people use who have failed more traditional treatment courses (which could include the interferon medications, steroids, even plasma exchange) or who have very aggressive disease. And although you haven't described your case in much detail, it appears you haven't been treated with anything for the past few years. So it does seem like a bit of a jump to Tysabri...

          But the most important thing is that you have a very experienced Neurologist who specializes in multiple sclerosis at a major medical center, where they are likely treating many patients with Tysabri. Consider getting a second opinion - UCSD and UCLA are the strongest Neurology programs in your area, so consider getting an appointment there. Bring all of your records, MRIs, lumbar puncture results with you.

          The AAN has published a new guideline on the use of the drug natalizumab for the treatment of multiple sclerosis (MS) that may be of interest to you and applicable to your daily practice.
          According to the guideline, strong evidence suggests that natalizumab reduces disease activity and severity in people with relapsing MS by both clinical and MRI measures. Because of the possibility that natalizumab therapy may be responsible for the increase risk of progressive multifocal leukoencephalopathy (PML), it is recommended that natalizumab be reserved for use in selected patients with relapsing remitting disease who have failed other therapies either through continued disease activity or medication intolerance, or who have a particularly aggressive initial disease course.
          Strong evidence suggests that there is an increased risk of developing PML in patients receiving combination therapy with IFNß and natalizumab.
          The guideline found insufficient evidence to compare the efficacy of natalizumab to other available disease-modifying therapies.
          View the full guideline, clinician summary, patient summary.