Living With MS

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

Friday, January 23, 2009



My Tysabri Diary.....,

Hi everyone,

I had my 30th Tysabri infusion on Wednesday..., all went fine. My infusion nurse even got me with just one stick, yay!

Nothing really new to report other than my very small infusion center has two new Tysabri patients, yay again!

Since my MS is remaining stable while on Tysabri, I have received a few e-mails over the last two weeks from MS patients that were inquiring about these deaths, taking a "medication break", and if I'm scared of PML, etc...., also answering the same questions on the different MS boards that continually visit. I've also been correcting misinformation posted about Tysabri on various MS blogs.

What I do find very interesting is that one particular MS board/blog that hosts over 3000 MS patients, their friends, their families & caregivers is that more and more MS patients are posting their experiences while on Tysabri and most of their experiences have been more often than not very positive, encouraging, and upbeat... (this is a very drastic change from a year ago when there were only a few of us posting on that MS/blog).

I guess such a welcome "change" doesn't only apply to our government (heehee).

I'm off to do my physical therapy, so I have a great weekend everyone. My best to you all,

((((hugs))))

Love, Lauren :)

10 Comments:

  • At 3:37 PM, Blogger Erin said…

    I'm so glad the infusion went well! As always! After about a week after my first infusion, I'm feeling much like myself. I can't wait for my next one, and I really really appreciate everything you did for me.

     
  • At 4:30 AM, Anonymous Anonymous said…

    I'm also pleased that Tysabri is continuing to provide you and many others good protection as you live with MS. Do you have any recent links to research on the effects of those going off of Tysabri, for various reasons,after being on the drug for many months? I know you have written about your personal experience when Tysabri was pulled by the FDA. I am concerned for those women, albeit a rather small percentage, that choose to go off to become pregnant. From my readings, the results have the risk of actually increasing some of the more debilitating factors of the desease, but I am wondering if there are any recent studies? Thank you as always for your calming influence on the Tysabri community.

    Deb

     
  • At 7:16 AM, Blogger herrad said…

    Glad to read that the Tysbei helps you.

    Think it is important to make the best and most out of what we have.

    Drugs apart from baclofen for spasms and weed for the pain do nothing for me with primary progressive ms.

    Very much support anything that will stop the progress of the disease.

    Good luck.

    Love,
    Herrad

     
  • At 5:42 AM, Blogger mugzy said…

    I Had RRMS And now the Doctor i just seen told me I have Primary Progressive and the Tysabri is no longer helping me But it was great for the First year but the last 3 infusion have not helped me so now Im off to try something else.
    Hope it keeps helping you.

     
  • At 9:12 AM, Blogger herrad said…

    Hi Lauren,

    Your blog is lovely full of great posts and photos.
    Thanks.
    Love,
    Herrad
    my partner/carers blog
    When I was diagnosed in 2006 I was so shocked felt my life had ended did not expect to wake up the day after but I did.
    Then slept loads and was abit of a hermit, also cos could not walk any distances

     
  • At 6:47 PM, Blogger Cathy said…

    Hi Lauren,

    I have also had terrific success with Tysabri. I just had my 27th? infusion. I lost track. My wheelchair sits in the living room and I absolutely refuse to dust it. haha! I often lose my cane arond the house. Don't tell my neuro I'm not using my cane because I'll deny it. haha!

     
  • At 1:51 PM, Anonymous Anonymous said…

    Lauren, I have noticed you promoting Tysabri in so many places. Since the research shows Tysabri may not help reduce disability, I am wondering if you are paid to this? Your advocacy has been great for the pharmaceutical companies but I'm not so sure it is really helpful to those of us with MS given current resarch.

     
  • At 4:28 PM, Blogger Lauren said…

    Thank you all for your wonderful comments! If I missed any of your question, please ask them again on one of my most recent posts so that I will be sure to see & answer them individually.

    To anonymous:

    Let me clear up a few of your misconceptions..., first of all, I'm not paid by anyone. I am no longer able to work. My advocacy is to help inform my fellow MS patients of the different FDA approved treatments, and that includes providing accurate Tysabri information.

    Secondly, you incorrectly state that Tysabri has not been shown to be effective in reducing disability..., please be advised that Tysabri can and has reduced disability in some patients. See the following: http://www.elan.com/news/full.asp?ID=1199030, which undeniably finds that Tysabri demonstrates sustained improvements in function.

    Specifically, researchers found that in the Phase III Affirm trials, Tysabri is the only marketing MS treatment to show both significant slowing in disability progression and sustained improvement in physical disability.

    I hope this clears up any misconceptions you obviously continue to believe.

    All my best to each of you,

    Lauren :)

     
  • At 5:11 PM, Blogger Erin said…

    2nd Tysabri infusion Friday. All went well. I wasn't exhausted as long as the first time around. I have the nurses numb my arm with lidocaine first, so if I have to get stuck more than once, I'm good! My only side effects, outside of the exhaustion, is moodiness (although that's not lasting as long) and I'm breaking out in hives on my wedding ring finger. Yeah. Weird, huh? Second time it happened immediately after the infusion, I knew it was just a side effect. Tysabri is awesome! I wish the drug company would hire me as a pharma rep for them. I'm in sales already, and I could sell the heck out of that drug.

     
  • At 8:25 AM, Anonymous Anonymous said…

    Hi: I have been on Tysabri for a about 2 1/2 years. I am now considering giving it a break and hoping to have my second child. have you heard anything about people getting off Tysabri to have kids? were this children OK, etc.?

     

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