Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Thursday, August 09, 2007

Tysabri, My Tysabri Diary...My 11th Tysabri infusion was yesterday, and boy oh boy - do I feel like Barry Bonds today! (Although I can admit that this feeling is drug enhanced - heehee).

I can still wiggle my toes a little bit this morning and move my feet slightly, my balance is improving, as well as my strength, speech, cognition, and coordination. Even though these improvements for me don't last the full 28 days until my next infusion, when I do feel them again, the feeling is just awesome,
woooohooooo!

Considering August is the month for the heat of the Summer to kick in, and a majority of MS patients don't do well in the heat (the heat can cause relapses and exacerbations of MS symptoms), I am doing really well at this time of year and my active MS has been abated/controlled outstandingly with the help of Tysabri.

Even though I am not receiving outstanding results like some MS patients are, I am still thrilled with the use of Tysabri because it is preventing further relapses and slowing my disease process down.

I can and will never lose hope for making more improvements (even in the face of reality) with Tysabri because for me, Tysabri = Hope!

Yesterday, during my infusion, a lady in the infusion chair next to mine, struck up a conversation with me regarding autoimmune diseases. She was about my age and receiving Remicade for her rheumatoid arthritis. She is also on methotrexate and prednisone, and has her liver checked regularly. She asked me what medication I was on and for what, so I told her Tysabri for Multiple Sclerosis, and briefly discussed Tysabri, its side effects, its current uses in MS and soon Crohn's disease,
and its prospective uses, as well as the bad rap (PML) it received.

She asked me if she could see the Patient Medication Guide that they give me at each Tysabri infusion, and I said of course (I had at least 10 of them - LOL). She is actually a very lucky patient with RA because it is only in her feet and hands - it is not in her back, neck, or knees (as of yet), but she wants to discuss fully the side effects of Remicade, prednisone, and methotrexate with her doctor.

She also wrote down the Elan website, the MSPatientsForChoice website, and we exchanged phone numbers. Odd, could she actually be starting the journey of becoming her own patient advocate? Ha!


We actually hit it off pretty well because she lives not too far from where I used to live...and we talked of old times there.


Her infusion time is approximately 4 hours every five weeks, and my infusion time (one hour, and then one hour observation time) just flew by this time, and before I knew it, my infusion nurse was unhooking me and telling me that I was free to go!

All in all, it was a wonderful infusion experience, and now I am off to do my PT exercises.

Woooooohoooooo for stabilization of my MS and wooooohooooo for Tysabri!


Have a great week everyone,

(((hugs)))
Love, Lauren :)

A very proud member of www.MSpatientsforchoice.org

6 Comments:

  • At 8:57 PM, Blogger Sharon said…

    Fellow MSer. I just went back on Copaxone. I was off for 5 years because I couldn't afford it but with my latest exacerbation my doc wanted me back on. I haven't heard of Tysabri before now. Sounds like you are doing great.I'm going to go to the website and learn more about it and ask my doc next time I go.

     
  • At 5:44 AM, Blogger Merelyme said…

    you sound very good! seems a lot of folks are trying tysabri. my insurance won't pay for it.

     
  • At 1:19 PM, Blogger Lauren said…

    That's good to hear Sharon, we all need to be our own patient advocate... and Tysabri's 67% efficacy sure beats the ABCRs efficacy rate of 29% to 34%!

    Please keep me posted Sharon...wishing you all the best.

    Lauren :)

     
  • At 1:21 PM, Blogger Lauren said…

    merelyme... please send me an e-mail and refreshed my memory as to why your insurance won't pay for Tysabri, okay?

    Thank you for your comments, and hang in there.

    Lauren :)

     
  • At 1:42 PM, Blogger reality chick said…

    I am doing Tysabri after all of the other drugs didn't work. I was heading down a scary road and so far Tysabri has been the answer to some prayers. I am having my first attack in a year which is a record for me! Good luck to everyone!

    keli

     
  • At 2:56 PM, Blogger Lauren said…

    Oh how wonderful Keli!

    May you always continue to improve with Tysabri's help.

    (((Many supportive hugs to you)))

    Lauren :)

     

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