My Tysabri Diary...I had my 8th Tysabri infusion Wednesday, and after a long rest when I returned home - I feel wonderful today, wooohooo! When I asked my infusion nurse how many MS patients they are treating with Tysabri, she told me that they are currently infusing approximately 15 - 20 patients, and adding more weekly. She also said that some patients are afraid of this 'new' drug.
Rut roh...., I immediately gave her the FULL Lauren, as a friend of mine so entitled it - lol. To make a long story short, when I said there were over 10,000 of us currently receiving Tysabri that weren't scared of Tysabri, I noticed there were approxmitely 6 other Certified Infusion nurses gathered around listening.
I asked them, where are the cases of PML in non-immune compromised MS patients receiving Tysabri as a monotherapy? Why are some of the MS patients that don't have permanent disability from this dreadful progressive disease noticing improvements in their symptoms from their Tysabri infusion? Why aren't others like me having increased disease progression and more relapses while on Tysabri? Why aren't ALL of us getting worse?
I gave them the truth about Tysabri so that they could educate other patients and other professionals in the medical community.
My main point to them was that Tysabri's superior efficacy and three year safety data has been basically surrounded in a cloud of doubt by false and misleading information purposely created by various media and it's competetors.
However, many patients are hearing the truth about Tysabri from other patients, and slowly given the option of switching to Tysabri by their neuros after fully discussing same with them. MS patients and their treating physicans are listening.
Additionally, there are many others (some of you) that are challenging these 'falsehoods' and not just sitting by watching, they are doing something and becoming involved - with others becoming unknowing patient advocates for the uninformed by offering/talking about accurate Tysabri information to patients they meet, neighbors, family and friends.
My hope remains to improve with Tysabri because so far, I haven't become worse -
wooooohooooo!
(((hugs)))
Love, Lauren
A very proud member of www.MSpatientsforchoice.org
posted by Lauren @ 12:09 PM
6 Comments:
At 3:54 PM,
Anonymous said…
I just started working for the company that makes Tysabri. I am glad to hear it's going well for you, and your experience has been good.
-Signed, Anonmyous Pharmaceutical Administrative Assistant
At 4:52 PM,
Anonymous said…
Hey there Lauren -
I had my first date with "Ty" (as I so lovingly name it) this past Thursday. I was extremely nervous to begin with, but when one of the nurses told me that I am their first MS / Tysabri patient, and then I saw them all conferencing about the way to constitue it, I got even more weary. I got through with very little side effects, but in hindsight, - I also began to wonder why they ran a bag of sodium chloride concurrent with the Tysabri (both were dripping at the same time). They said that it was 'normal procedure' for their chemo patients so that they would't get so nausiated.
I read the protocols, and noticed that #7 states that Tysabri is not to be given with any other medications or dilutents. That night, I called my Tysabri case manager and let her know. She's checking into it, and I haven't heard back yet. But - I'm still not giving up hope - I'll be back in 28 days!
Take care,
Heather from Indy
At 7:59 AM,
Cyndee said…
Hi Lauren! The doctors office I go to for my Tysabri keeps a running list of how many patients in his office taking the drug, and the results are pretty good. They have taken 4 people off the drug.
Some patients have had outstanding, great results, and some don't feel any different, except no more episodes. 8 patients out of 80 did have an episode since taking Tysabri. I think Tysabri, like Ms, is going to be different in each of us. But, I can't wait to see what will happen with my next infussion!! You can't get the HOPE that Tysabri gives, with any of the other medications out there. And HOPE is the greatest drug out there.
Thanks again for fighting for all of us Tysabri users out there.
Cyndee
P.S. I hate this word verifcation! I type the letters and it always comes back to re-type the letters!
At 12:19 PM,
Lauren said…
Thanks so much for your reply APAA (heehee), sorry for the late reply-I've been busy.
I hope that you enjoy your new position there, and thank you for helping those of us MS patients with Tysabri.... congrats on securing a job!
Enjoy your weekend... Lauren :)
At 12:26 PM,
Lauren said…
Hi Heather!
Thanks so much for letting me know how your first infusion went. In hindsight no big deal right? (Smiling)
You said: "I read the protocols, and noticed that #7 states that Tysabri is not to be given with any other medications or dilutents. That night, I called my Tysabri case manager and let her know. She's checking into it, and I haven't heard back yet. But - I'm still not giving up hope - I'll be back in 28 days!"
I'm interested in knowing what you're Case Manager found out... let me know, and keep me posted on your progress, okey-dokey artichokie? ;)
Lauren
At 12:37 PM,
Lauren said…
Hey there Cyndee!
Sorry for the late reply, but I've just been real busy lately.
I'm so happy to hear from you girlfriend... you said: "Some patients have had outstanding, great results, and some don't feel any different, except no more episodes. 8 patients out of 80 did have an episode since taking Tysabri."
The 76 patients on continued Tysabri therapy? Now that deserves a Woooohoooo!
How are you doing though?
I forget who asked me, but they asked "If I could describe Tysabri in one word, what word would that be?" I smiled to myself and immediately said that one word would be HOPE!
Sorry about the word verification but I have to keep it on my blog, I get too many spammers if I don't.
Talk to you soon, many hugs...
Lauren :)
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