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    Sigh....

    According to my Neuro, Tysabri is my "Hail Mary" pass. Copaxone and Rebif were not effective.

    I'm coming up to my 7th infusion and I've seen no improvement. Spasms seem worse and if I'm walking for more than around the block, I need the walker. Fatigue and Parasthesia (sp?) seems worse, to the point where I need to visually inspect for cuts, burns and bruises.

    I've gotten 2nd and 3rd degree burns on my hands that have healed beautifully, no infections and that worries me because I don't think the Tysabri is working. I see my Doc again in Oct. and I'm going to request an MRI. He seems reluctant to order any testing right now, unusual.

    I had big hopes and now I'm just disappointed.

    Peace.
    Anna

    #2
    Hi hobbit, I am surprised your neuro hasn't ordered an MRI I would press him for the MRI.

    I noticed small improvements: stamina, balance-can't remember In time these small improvements, and no new or active lesion MRIs led to a better QOL

    I wish you well !!
    Linda

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      #3
      According to the Oncologist that I receive my Tysabri, the drug Rituxan very well may be the newer and better version of Tysabri. With a significant decrease in the PML rate.

      I had a very long discussion with her during my TY Infusion last week. The trials are going very well in her opinion. Additionally, she has a few patients that received FDA compassionate use approval, and those patients are doing well.

      Let's keep our fingers crossed, but don't anyone hold their breath...I think most of us who have had MS long enough have been down the Path of Great Expectations, only to be disappointed.

      I also agree your Neuro should do another MRI. The drug might be working and you just dont know it yet.
      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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        #4
        Hi Katie, I was ready to switch to Rituxan when I asked my Dr about sx relief. He said it did not take away sx, only Ty so I chose to stay on Tysabri going every 6 weeks. I do not want to lose my QOL/
        I think I've heard of someone getting out of a wheelchair and another no longer needing a cane after Rituxan. Enough to make me crazy
        Linda

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          #5
          Hi Hobbit,

          I have not had any new lesions while onTysabri, but all old ones remain unchanged after 2 years. I have had symptoms worsen, but probably because of all the old damage. However, I am not having relapses and my symptom progression has slowed when compared to prior meds.

          I take that as a victory. While not the miracle drug some people experienced, it has slowed progression. That I'll take.

          Hope you get your MRI soon. Feel better.
          Kathy
          DX 01/06, currently on Tysabri

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