Living With MS

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

Sunday, April 08, 2012

(LOL)


My Tysabri Diary...

I wanted to take this opportunity to wish everybody a very blessed and happy Easter Sunda...,

I'm off to go visit my sister and her family.

Take care everyone...,

((((hugs))))

Love, Lauren :)

4 Comments:

  • At 12:17 AM, Anonymous Anonymous said…

    hi lauren,

    just wondering if you've had an experience like this. Infusion #6 was 2 weeks ago and it hasn't 'kicked in' - normally i feel full of energy etc within 5 days - but this time around, nothing. I feel like i do a few days before my infusion.

    I was pretty stressed for a few weeks around infusion time... perhaps stress makes tysabri less effective?

    its all i can think of thats been different. With that said - i've still got 2 weeks till #7 and i'll be able to tell then ... all in theory of course :-)

    mark
    australia

     
  • At 1:54 AM, Anonymous Anonymous said…

    i'll update my own comment :-)

    infusion #7 'kicked in' quick but only lasted a week... wait and see

    i also had my jugular vein scanned and one is 75% narrowed... im having the CCSVI op done next week - heres hoping

    mark
    australia

     
  • At 4:33 PM, Anonymous Anonymous said…

    Hi Lauren,
    I wanted to take a minute to say thank you for this blog. I was very nervous about my 1st infusion until I read your blog. My husband and I had researched read all the scary info as well as the benefits of Tysabri. After testing for JC virus finding out I'm JC- we decided to move forward with this treatment.
    I trust my neuro however after a year on Avonex and the side effect, I stopped that treatment. Sick and tired of being sick and tired from medication. I presented the idea of Tysabri at my appt in March, and he jumped on board.
    Nerves started to take over on Friday after reading a Facebook comment. My unbelievablely supportive mom who should never do a google search did and called with her new fears. After 2 sleepless nights I found your blog. I read every entry and calmed down.
    I had my 1st infusion on Monday. I have an Amazing infusion nurse, she hit on first attempt I have NO brusing completely amazed!! I did end up at the ER at midnight with the worst migraine I have every experienced and I have them often. Meds treated it and I feel fantastic! Neuro has implemented a game plan for pretreatment to help prevent a migraine for #2.
    Antway thank you again for the blog because I'm certain without reading some positive words about my medication of choice I would have talked myself out of my 1st infusion.

    Jen

     
  • At 1:13 PM, Blogger Hambone said…

    Lauren! How cool are you?! I just read your "laymens" definition of how Tysabri works on another website... that helped me so much. I have been on it for over a year now, and always was curious about why I never heard of anybody having PML... I am in North Carolina (North Kackalacky to the locals) and NOBODY here has ever gotten PML. I would love to share in depth with you my story sometime and hear yours... I was in an electric wheelchair 14 months ago, and now I am running, canoeing again, and playing the piano (I had started to lose sensation in my right hand-eek). Shoot me an email when you get the chance!
    Eric
    erichammotrl@gmail.com

     

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