My Tysabri Diary.....,
Hi everyone, I received the following message from a new MS friend I made yesterday, and I have her permission to post this on my blog:
"I want to thank you for your Tysabri Talk thread. I know you get accused of being a "Tysabri cheerleader," but why wouldn't you be? I hope it works for me, and I'll don the mini skirt and be right next to you, shaking those pom poms! Since my dx 7 years ago, I have been watching every single development in MS medications very carefully, and when Tysabri came out I was excited, but I knew I wasn't really a candidate yet for such a new medication. It's scary how quickly I DID become a candidate, though. And I have never seen anyone accused of being a Betaseron, Copaxone, Avonex, or Rebif "cheerleader," because let's face it... at best they're merely tolerable and might help slow progression down a little, and at worst they're fraught with miserable side effects, and don't slow down progression at all. So this enthusiasm for Tysabri I've witnessed (on multiple different MS message boards I frequent) is really genuine, fairly rare among available treatments, and growing at a significant rate.
I've consulted two neurologists, one my regular "everyday" neuro, and one an MS specialist, and both concur this is the best medication out there, and I need to be on it. They quote the PML "official" risks, but both sort of rolled their eyes, "You're not gonna get PML." They have many patients on it, and have seen great success, so I trust what they say. And after being in a relapse for 6 months, I just refuse to keep going like this. Quality of Life, dammit! So I don't care how many times the Angel of Death posts the newest PML case on the board (I think you know who I mean; her name escapes me), I really have no fear of it. Honestly, the last 6 months have been really tough; I don't want to live like this anymore. PML is really the least of my worries. I mostly fear it not working... that would be the true tragedy for me. But I am optimistic!"
Enjoy your upcoming weekend!((((hugs))))
Love, Lauren :)
posted by Lauren @ 1:09 PM
2 Comments:
At 12:56 PM,
Justopia said…
Lauren,
Thank you for stopping by my blog and for commenting. I am baffled by the lack of "in network" infusion centers in my area. I live in such a large metropolitan area (DC 'burbs) and it was so easy when I first started in January, 2008 -- I had Blue Cross Anthem then. United Healthcare is a very different story though.
But reading through your blog I'm feeling more optimistic although I can't seem to get into the mspatientsforchoice site. Your blog is filled with so much information. It's very helpful!
At 1:35 PM,
Lauren said…
Hi Justopia (Fran I think it is?)...,
Honestly, contact your Tysabri Case Manager and discuss the problem you're having with them..., I am sure that they have dealt with United healthcare before and they have solutions to your problems, including financial assistance with your monthly co-pays for Tysabri.
The "mspatientsforchoice" website is currently in the process of being restructured by the website owner, to the best of my knowledge, so no one can access it.
Please keep me posted as to what your Tysabri Case Manager is able to do for you, okey-dokey artichokey? (Heehee)
Oddly enough, I used to be a "cooking aficionado" before I lost the use of my hands completely in the middle of 2007..., boy do I miss cooking my way!
Take care now, Lauren :)
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