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Copaxone to Tysabri?

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    #16
    Started Tysabri

    Morning,

    I started my first Tysabri infusion yesterday. Started the day w/ a good breakfast, plenty of coffee and advil. I met a very kind lady at the infusion site. She also has MS and has been on Tysabri for 5 years. She was an extremely kind and warm person who certainly made me feel much more relaxed. I also want to thank everyone on MS World who shared their thoughts, experiences and advice with me concerning the switch to Tysabri. This kindness shown to me will always be greatly appreciated!

    I wish everyone the best always!

    Demetrios

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      #17
      I am 43 and was a very active marathon runner etc, professional educated, am a military ofc wife, yadda yadda- now on disability, bla bla but maybe my exp can offer some feedback for you...

      I was on Copaxone for six years and tolerated the med very well. My symptoms progressed but I have very few new lesions. (I started with too many to count when dx).

      I've been on Ty for two months now and not liking it. The side effects I'm experiencing have me feeling like I just added more fuel to an already raging fire.

      Not sure if I will continue Ty, but this has been my exp albeit early on for this med. And it's not fun, I feel worse but in a different way. So sort of a trade off I'm not sure about yet.

      When I started Copaxone I didn't have any issues except the injections were sensitive in my thighs but that went away quickly and I have never considered another therapy until now.

      NOT because I didn't like the Copaxone, but because there was hope for improvement with Tysabri. So here I am.

      I am JCV positive. Of course I'm researching, discussing with my neuro and praying, just haven't decided yet to stay on it. If my confusion helps you any, yay

      Keep the faith and remember no one can take away out music unless we let 'em. Keep on playing in any way you can!
      There is always a rainbow!

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        #18
        Thanks for you feedback! Did you switch to Ty because of new lesion activity? If it wasn't for this, I'd still be on copaxone (less side effects) but I had a BBB break through thus new lesion activity. Just before starting Ty, my right hand went numb. Seeing Neuro next week. I had to cancel the few shows I had because now, I can't play my instrument. I knew it was inevitable... Hanging tough on this end. I got out of bed this morning and went to work. As much as work sux, I say Thank God for the things I can still do. I had a few reactions to my first infusion but no show stoppers. However, the doc (touch program) wants to be there for my next infusion. Just in case... I wish you the best with your therapy!!

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          #19
          Tysabri

          Hello,

          So, I started Tysabri January of this year (was on copaxone for 4 years). Tomorrow will be my 9th infusion. My doc wanted a new set of MRIs to see how well Tysabri is working for me.

          RESULTS:

          Cervical Spine w/ and w/o contrast:

          No new cervical cord lesions are identified. (all previous cervical lesions are identified from past MRI).

          ---------------

          Brain w/ and w/o contrast:

          Although no new lesions are identified, multiple of the previously seen lesions are showing mild enhancement.

          (to me, this reflects another possible BBB breakthrough? I placed a call to my DOC today to get more detailed information).


          ----Did not do a Thoracic MRI at this time...

          On a very sad note, my friend's husband Bruce who was diag. 15 years ago with MS, has passed away at the age of 54 due to complications. He was unable to breath on his own.

          Located the following:

          The cause of death in 50% of a clinic population and in approximately 75% of all multiple sclerosis patients is from complications of multiple sclerosis, usually pneumonia (Sadovnick et al 1991; Reder et al 2012). Patients most commonly die when disability scores approach 8.0. Brainstem lesions occasionally cause loss of inspiratory drive, causing the patient to stop breathing; this is most common at night. Deaths from malignancy are less common than in age-matched controls (Sadovnick et al 1991). The cumulative lifetime dose of disease-modifying therapy improves prognosis.

          So extremely sad...

          "Live each and every day!!"

          Much Love and prayers to all who suffer!

          Demetrios

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            #20
            Hi Demetrios, how is your R hand ? How is your QOL and other symptoms (sx) ?
            Maybe in time your MRIs will be better, at least, no new or active lesions.
            Thank you for the update
            Take care
            Wishing you and all of us Well
            Linda

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              #21
              Hello Linda,

              I have been able to get almost back to where I was 9 months ago (last flair up, Jan-Feb-Mar of this year). That's so unbelievably huge. I have been (trying) working out to get some strength back and walking as much as I can. I had a show on 9-13 (Jazz)! It was a "good" day. Trying to drum as much as I can. My Neuro's always said this was good for me to do. So, Thank God, doing what I can, the best I can, until I can't any longer. There is much to be thankful for... Staying positive. I hope you are doing well!



              The link above was from Jan 14' just before the flair up. The show on 9-13-14 was with this same ensemble with an amazing keyboard player to boot. I never thought I would be able to pick up a pair of sticks let alone play a show... I Thank God daily for the things I can still do each day as I know what this horrible disease will do.

              Take care and enjoy each and every day!

              Demetrios



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                #22
                Demetrios, I, too, give thanks to G-d, but I also give thanks to this wonderful med Tysabri. It has stopped the sx that were causing me to worry about the direction my life was heading, halted progression and I have had no new or active lesions-Thank G-d and Tysabri

                I have now started my 9th year, I am getting my infusions every 6 weeks and had an MRI which is stable YEA!!

                I am happy you played your music
                Linda

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                  #23
                  I met with my Neurologist and his team yesterday. I feel so blessed to have such great docs... Anyhow, regarding the enhancement in the older lesions (Brain specifically): The radiologist reading the MRI's saw slightly whitened (enhanced) older lesions (gadolinium image) and being on the safe side, dictated a possible enhancement. My doc pulled up the areas in the brain w/ and w/o contrast on two separate displays (gladly spent 2.5 hours with them yesterday having the normal neurological tests conducted ect). He showed me how the least older lesions will reflect slightly w/ gadolinium and the radiologist was just being prudent in her readings. If the lesion reflected activity (or new lesions), it would be "bright white" on the image w/ gadolinium. In summary, NO NEW LESIONS at all!!! Thank GOD!!!! JCV results: still negative. So far, so good with Tysabri! "9th year..." That's amazing.

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