Living With MS

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

Wednesday, March 19, 2008


My Tysabri Diary...

Hi everyone...I just finished my 19th Tysabri infusion and everything went fine. Even had my blood drawn afterwards to check my liver function enzymes which I have done every six months pursuant to my neurologist's instructions. I even have a six-month follow-up appointment with my neurologist tomorrow.

One of the infusion nurses at my infusion site mentioned to me that her sister is being tested for MS, and so far, it's looking like she's going to receive a confirmed diagnosis of MS very soon. She asked me many questions about Tysabri, and I gave her whatever information I had, as well as my opinions about Tysabri, and suggested that her sister discuss Tysabri with her neurologist...Time is Brain.


When I got home, I checked my messages and here is one from a sweet young lady who is inquisitive about Tysabri (I post this in the hopes that she understands many people have questions of me about Tysabri, and I did not post her name nor e-mail address to protect her identity, just remember everyone, we are not alone with our MS):

(paraphrasing)

hi lauren my name is xxxxxx and i was dio. in1995 at the time we were wanting to have a baby so no meds plus we didnt have any health insurance. in 2000 i had an exerbation that took my right side and with therapy for 2 weeks (which i hated) i was able to regain my life with only a limp. 2003 i had another on and i havent came back yet i had therapy but i lost it i walk holding onto evefrything but outside my house im in a wheelchair i was on avenox for 1 year but the side effects i could not handle so have been on copaxone since august of 2007 the first week i felt my feet they wernt numb to i really got exctied thinking it was gonna help me get my life back BUT all i can tell now is that i havent had any more relapes and i feel like im ganing weight. i have a friend thats gonna start trysbi was just wanting an other opinion she thinks i should try it. im also taking low dose naltroxne it makes me not so tired but not a lot else. please i need some input.i have 2 young children my boy is 8 and he pushes me in wheelchair i ahte that. sorry about my typing wanting to make a friend who understands xxxxx

(my reply to her)

Hi xxxxx! Thank you so much for your e-mail, sorry for the late reply, but I just got back from my 19th Tysabri infusion and I'm a little tired. I absolutely hated Avonex, I just could not handle the side effects. I failed Copaxone is that it never stopped any of my relapses.

I then went on Tysabri in early 2005, and boy oh boy, what a miracle drug that turned out to be! I had put away my walker and my cane, my slurred speech was gone, my optic neuritis was gone, my limp was gone, and my right drop foot was also gone. My balance was just starting to come back, but it was not back fully with just that one infusion (all of those improvements I had in early 2005 happened within two weeks of my first infusion!).


Tysabri was then removed from the market when I was due for my second infusion in February 2005, and in mid-June, 2005 I suffered a massive relapse which landed me in a wheelchair. Until Tysabri returned to the market in July 2006, I was having a relapse almost every month (and that lasted over year). I even tried LDN too for about six months, waiting for Tysabri's return its market... it did help initially for about two months, but that stopped working for me.

When I restarted Tysabri in October 2006, I have not had relapse nor any disease progression since that time, and that has been 17 1/2 months! I still hold on to the hope that one day I will walk again, but even if I don't, my quality of life is still 100% better than it was without Tysabri.


You asked for my opinion, so here it is: you and your friend should start Tysabri therapy as soon as possible so that your respective disabilities do not become permanent. Enjoy the benefits of Tysabri while you can, don't wait... Time Is Brain... who's brain? Your brain!


In my book, Tysabri = Hope... Hope for a better future, not just for me, but hope for anyone on Tysabri. You have young children, they need you, and you need them. Here is a link that you need to read about Tysabri (it is a Tysabri Brochure) that will help explain the medication to you: http://yedi.com/elan/Tysabri_Booklet_08_2007.pdf

I will be here if you need me xxxxx, so please don't ever hesitate to contact me in the future and I will help you as best I can, even if it is only to listen to a friend...no worries xxxxx, think positive and remain hopeful.

All my best,
Lauren :)

It is dinnertime here, and I'm getting ready to have my regular treats: pizza and mudslides, then I'm off to bed after I do my physical therapy exercises. Life is good...,

I hope everyone is well, and stays well.

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

5 Comments:

  • At 5:44 PM, Blogger LISA EMRICH said…

    Hi, I apologize for the 'form' letter but it is the easiest way to pass word most quickly.

    I am thrilled with the response to the MS Blogger project started at my blog, Brass and Ivory. I appreciate all those who took time to post about it on their blogs. I have discovered even more bloggers who have MS, whether they blog about the MS or not. A new listing is available at MS Blogger Community Project Revised.

    Secondly, I'm looking for submissions for next week's Carnival of MS Bloggers. Information can be found at the end of each issue archived at Carnival of MS Bloggers. What I'm looking for this week are posts related to creativity. I discovered so many new bloggers who quilt, or knit, or crochet, or write, or photograph, etc. Basically, what do you do to express yourself?

    Thank you so much for participating.

    Lisa Emrich

    P.S. I also apologize for any increased 'spamming' of blog comments due to my growing linklist of bloggers with MS. For that I am sincerely sorry.

     
  • At 10:24 AM, Blogger Mikey said…

    I was extremely sleepy & feeling the full effects of Lunesta when I posted yesterday. LOL. Sorry about that, I am fully aware of your encouraging BLOG. You're right about being sleepy after the TYSABRI. The infusion was painless & I will continue to play the MS waiting game. God is good, as always!

     
  • At 1:12 PM, Blogger ms'er faith said…

    It's me again! I should email but this is easier. I had a baseline MRI of my brain which showed there is nothing there (ha, ha--meaning there have never been lesions there), so I the doc thought that was odd. He tested me for some other disease which came back negative so I just had MRIs of my back which is where MS has been all along. You seem to know resources--I wonder who I could talk to about MS being localized to the spine and would Tysabri work the same way? I wonder how many anomalies like me are out there with it localized to the spine. I guess I should feel lucky except that I can't walk much!

    I never got your whole story. I'm hoping you walk again too!

     
  • At 10:42 AM, Anonymous Maggie said…

    Hi Lauren. I often read you but don't comment so much. But I have to say that I find you totally inspirational. With a capital 'I'. I hereby present you with the 'You Make My Day' blog award. See my blog for details if you like. It's on my @ April entry. Have a great day.

     
  • At 10:44 AM, Blogger Vic said…

    Greetings, Lauren.

    I hope that everything is going well with you.

    Hang in there and try to keep as cool as possible because it is going to be a hot one for all of us here in CA today.

    I just received a call from one of my biologist working in the Antelope Valley and she said that it was heating up pretty quickly.

    Take care and crank up that AC.

    -Vic

     

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