Living With MS

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

Sunday, July 08, 2007

My Tysabri Diary...Patient Advocacy

Many of you might be wondering why I am posting a blog entry like this ... well, I was visiting a MS blog where a young girl was spouting false information regarding Tysabri. So when I attempted to nicely enlightened her, she copped a major attitude with me and it became clear that her intentions were to seek sympathy and cause confusion among the other MS patients. Well that didn't sit to well with me, and I pretty much blasted her in a private message, so as not to embarrass her further in public (as she was doing a pretty good job of embarrassing herself due to her ignorance) - LOL

As a MS patient for over 31 years, current Tysabri patient, and active member of the MS community that encourages patients to be their own advocates, anyone reading my blog should be aware that I am only one of many who are extremely tired of Tysabri being unfairly maligned by these largely avoidable drug interactions; Tysabri's RiskMap/TOUCH protocol mitigates the 0.1% risk almost completely. And we do understand that no drug is without risk, not even aspirin.

Furthermore, we are aware of the very significant fact that Tysabri alone quite clearly did NOT present any extraordinary risk. It was the combination of Tysabri and other immune modulators and other immunosuppressant drugs that created the risk that caused Tysabri to be voluntarily withdrawn from the market for 15 months.

Many
MS patients become disabled to the point that they cannot work and/or experience a very poor quality of life due to increasing and accumulating disabilities. Our patient population also has a very high suicide rate due to no hope left for many to hold on to, despite family and professional support.

Having Tysabri unfairly labeled
as a risky or "killer" drug by many in the media, and by arrogant, ignorant patients and professionals, discourages many naive patients and neurologists from fully considering Tysabri's use, which in turn deprives those patients and their families from its benefits that could accrue if the true and full facts were represented.

A large majority of MS patients are quite well-versed in Tysabri, and they view false media reports and false/ignorant patient information as biased and nothing more than "throwing the baby out with the bathwater."


Whether or not you are a Tysabri proponent for it's use a DMD therapy for treating Multiple Sclerosis, one must realize that false information only leads to uninformed MS patients suffering new and further (and quite possibly permanent) disabilities, many of which could have clearly been avoided with Tysabri's superior efficacy of 67%.

It's our treatment choice, and it's your choice as well to state the true and accurate facts regarding Tysabri.

(((hugs)))
Love, Lauren
A very proud member of www.MSpatientsforchoice.org

16 Comments:

  • At 8:28 PM, Blogger Penny_Ann said…

    Hi! It's Penny_Ann from Livejournal.

    I'm having a hell of a time getting Tysabri going, but I'm hanging in there. It has been 3 weeks since my doctor sent the orders to the Tysabri TOUCH people, they got me an infusion site pretty much right away, but that's where it stalled. The guy at the infusion center I'm supposed to talk to about checking into my insurance and setting an appointment is NEVER THERE. I have left him a message 3x a week and every other day last week and have still not spoken to him. I called the TOUCH people on Friday and requested that they find me a new infusion center. Here's hoping this will do the trick.

    I think as far as misinformation goes, a lot of people (doctors included) just aren't using Tysabri because no one knows what the long term effects are going to be. That's true of any medicine that hasn't been around but a few years as Tysabri has... and sometimes the worry and concern leads to exaggeration of the risks and fear about the risks.

    I for one hope that the long term will be positive for Tysabri, since I'm gonna be taking it. It is kind of my only option apart from chemo drugs at this point, and those are known to be nasty to your body.

    Anyway, just thought I'd say Hi... we haven't had the chance to talk much since we posted back and forth some awhile back. Hope all is well with you, and wish me luck in getting the Tysabri knots untied so I can start treating this darn disease again!

     
  • At 5:56 AM, Anonymous Shannon said…

    Oh, I know! I appreciate all you do. I can't say how many times I've tried writing letter to editors when I see Tysabri misrepresented in articles.

    Yes, there's the %.01 PML chance (if that when used properly), but I'll take that over the strong likelihood of being an infertile woman at 24 on the chemo they were trying to convince me to take. Why is there no ethical issue with that, but Tyasbri is such a big deal? Or the Provigil I was prescribed, only to see on the label, after I got it, that says it not only make birth control pill ineffective but will cause pretty severe birth defects. Seeing as how most people initially diagnosed are women of childbearing age, you'd think they choose Tysabir to treat fatigue and flare-ups before chemo and provigil...I just don't get it.

    Keep doing the good work! We all appreciate you!

     
  • At 9:37 AM, Blogger Cyndee said…

    Hi Lauren! What is with these people?!!! Write to me on my email and let me see the article ok?
    I have been back posting on my blog and have some good news!
    I have asked my infusion nurse about her patients that had to drop out of the Tysabri program because of allergic reations and out of 80 patients only 2 had dropped out. 1 got a rash, and 1 got headaches. Believe me, to me that is NOT a reason to drop out of the Tysabri program!! To me, if you haven't had an exaserbations like you usually do, (I usually have at least 2 from Jan-june), then keep on it! Knock on wood I have had none since starting Tysabri in December!!! Yeah!!!!

     
  • At 9:43 AM, Blogger mdmhvonpa said…

    Heh ... love the pic!

     
  • At 9:28 PM, Anonymous Anonymous said…

    i am so proud of how much people with MS do to stay informed about their health and to protect themselves. many people who call me know more about tysabri than i do
    penny_ann, i hear stories like yours all the time. i had someone call today who had her doctor tell her that it takes 4-6 weeks. the infusion site said they were waiting for the doctor. we've been waiting on the doctor and the site since july 6th. with increased number of representatives finally trained and our data team working like mad, we've got the turnaround time down to 2-3 DAYS. unlike when you started lauren, we are getting good at this.
    - one of the people on the other end of the phone

     
  • At 1:21 PM, Blogger Lauren said…

    Hi there penny ann, considering what you just posted on your LJ blog, congrats are in order!

    Woooohoooooo!

    Welcome to the Tysabri train dearheart,

    Lauren :)

     
  • At 1:29 PM, Blogger Lauren said…

    Hi there Shannon,

    You said: "Why is there no ethical issue with that, but Tyasbri is such a big deal?"

    It probably has to do with Tysabri's competitors trying to keep this wonderful drug in a bad light, that's just my opinion... good question though.

    How are your infusions going dearheart? Please keep me posted on your progress okey-dokey artichokie?

    Warm hugs of support, Lauren :)

     
  • At 1:49 PM, Blogger Lauren said…

    Hi there anonymous! (aka one of the people on the other end of the phone) heehee,

    You said: "with increased number of representatives finally trained and our data team working like mad, we've got the turnaround time down to 2-3 DAYS. unlike when you started lauren, we are getting good at this."

    Well that's just wonderful to hear!! Especially if Tysabri is approved for Crohn's disease (there is a FDA AC meeting set for Tuesday, 7/31 where they will be reviewing all of the data regarding Tysabri for CD, and then making their recommendations to the FDA who will be rendering their final decision in October 2007 I believe)....more trained staff is a good thing!

    Thanks so much for your comments... it's good to hear that the manufacturer of Tysabri is finally starting to care about us patients instead of just their money profits being made on Avonex.

    Not to be mean, but realistic, I think the word "cannibalism" finally sunk in over there! (LOL)

    Enjoy your weekend, and take care now!

    Lauren :)

     
  • At 1:32 AM, Blogger Blinders Off said…

    I am glad Tysabri is still doing well for you symptoms. September is fast approaching and I can't wait.

    The morphine was keeping my pain and tingles away, but I had to take the patch off yesterday. I hope there is enough in my system to keep my pain and tingles away until I start Tysabri.

     
  • At 11:17 AM, Blogger Lauren said…

    Hi there B, thank you so much for your kind comment...oh man, the tingles are the worst, I know from living with them for 31 plus years..,

    When is your infusion appointment set for in September?

    Please keep me posted, okay?

    Lauren

     
  • At 11:20 AM, Blogger Lauren said…

    Yaaaaaaaaaaaay Cyndee!

    (((((hugs girlfriend)))))

    Lauren :)

     
  • At 12:40 PM, Blogger grover said…

    I FINALLY got approved for tysabria from my insurance after they initally denied me. Just got my first infusion this week! The insurance company's reasoning was that there was the danger of PML. So, apparently, they were looking out for me!?! Ha! That's laughable. They just wanted to save money, I'm sure of it. They stated that I had to try 2 other MS medications first. Well, I had already failed on beta seron but my neurologist said okay...let's put you on copaxone. If/when you fail on that then we could appeal. Well, 6 months later I had failed miserably on copaxone. Horrible injection site reactions and 2 more exacerbations to boot. In that time period, I had to go to the doctor numerious times, get solumedrol infusions, etc...
    My question to the insurance company is, "how much money did you save?"
    I wonder how many others this is happening to? Shouldn't we be totally outraged by it?

     
  • At 4:53 PM, Anonymous Maria Elena said…

    Hey! Greetings from Puerto Rico. My name is Maria Elena, I'm 20 years old and I've been a MS patient since I was 15 years old. It's been pretty hard for me to deal with this condition, academic obligations, my social activites, my fights for medical coverage and life itself. I even lost my short term memory for a while (You should have seen my boyfriend's face when I told him not to kiss me because I didn't even knew who he was), but with treatments and all the protocol, I recovered it. I have 14 spots on my MRI pictures (12 on the brain, 2 on my spinal cord). Lots of people tell me that I'm too young, and yet, they admire me for keep on living (I tell you, it's not so sexy to wear Poise or Depend or not being able to wear other shoes other than my trustful sneakers, but I don't care, I gotta keep on living in spite of what others may think of me).

    Currently, I'm using Tysabri and I feel as if I was the girl I used to be 5 years before. I feel way more confident and more happy. I have no idea why people, doctors and media are criticizing so much this wonderful medicine. When I first started filling out the papers for my first Tysabri, people asked me stuff, like: "Oh, my God! Do you have any idea of what you're doing?" and "But you're so young! Do you want to die?" But I stood up to them with attitude and clearly stated that this is my only chance to experiment an improvement in medicine, and if I should die trying to get better, I will die HAPPY, for I'm close to a healthy body, the one I used to have.

    I'm getting ready for my 6th Tysabri infusion. The nurse will use a needle and I'll be there for an hour. I'll listen to other people's stories, critics and non-believable stuff. But when I get out of there, and I wake up to see a new day, I'll look at my face in the mirror and I'll know I'm in the right path, I'll know I'm fine and most of all, I'LL KNOW I STILL HAVE A LONG WAY TO GO. And I will not die because of my beautiful, perfect therapy. I'll die old by any other thing, but not by my medicine because my medicine is just perfect!

    Blessings and many good wishes (the best of them all).
    Maria Elena (alias Pinball)

    *That's my nickname. I told a friend of mine that I walked like a pinball ball, everybody laughed (me too) and that became popular among my friends. I even use it on my MySpace profile because it doesn't bother me at all! (How could it bother me? After all, I named myself that way and it made me unique in my school and everything).

     
  • At 11:14 AM, Blogger Lauren said…

    Thank you all for your wonderful comments! Maria, please e-mail me at: LGLBGL2003@aol.com because I need to ask you a question, okey-dokey artichokey?

    Thank you all again, I send all my very best to each of you...,

    Lauren :)

     
  • At 8:19 AM, Anonymous Anonymous said…

    Hi Lauren, I'm TK from Charlotte, NC and hoping that you're doing well. Specifically well enough to share some insights with me. I am a long term Tysabri user and have had great success. Like others, I have tried and failed at other MS treatments (injections) and fail. Tysabri has been great for me. I've been doing well, without any side effects -- until now. I'm having terrible periods!! Have you ever heard of anyone else experiencing problems like heavy, or irregular bleeding?

     
  • At 11:59 AM, Blogger Lauren said…

    Hi there,

    If you look on page 10 of the Tysabri label, you will see that Dysmenorrhea is a side effect of the medication. I don't know anyone that has had this complication, but it is listed on the side effects..., see: http://tinyurl.com/y9tvyas

    I hope this information helps, take care now..., Lauren :)

     

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