Living With MS

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

Thursday, April 19, 2007



My Tysabri Diary...

I had my 7th Tysabri infusion yesterday, and right now, right at this moment, I feel terrific! Woooohooooo! My exhuberance is a bit tempered though as I am receiving a small handful of emails from Tysabri MS patients that are not achieving/feeling the same results of symptom improvement(s) as others have, and are becoming disheartened...so this post is for them, and for "newbies" to both MS and Tysabri:

For the disheartened....please try to remember three things - 1) The current level of your MS and disability did not happen overnight, therefore you must learn patience in your Tysabri treatments (attitude is everything when fighting your MS); 2) Tysabri is not a cure for MS or for your symptoms (especially if those disabilities are permanent); and most importantly - 3) If your disease has not progressed and you have no new symptoms since starting Tysabri, it's apparently working for you! Tysabri's label states: "TYSABRI® is indicated as monotherapy for the treatment of patients with relapsing forms of multiple sclerosis to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations."

Which is why I firmly believe (in my humble opinion) that Tysabri intervention is needed EARLY - at the first onset of MS (so that the damage does not become permanent).

Am I still w/c bound since re-starting Tysabri 7 months ago??? Yes (I have been w/c bound for 16 months +, since 6/5/05 - is it permanent? I honestly don't know, but my attitude remains positive and hopeful that with the help of Tysabri and my physical therapy exercises that
I still do 3 x's a day, I will walk again someday - albeit kinda funny looking - lol )...,

Are both my hands still numb? Yes (And they have been since my dx back in 1976 (so the damage is probably permanent -
but my attitude remains positive and hopeful that with the help of Tysabri, I'll gain back some of the coordination and dexterity that I still had in them prior to 6/5/05 );

Is my balance still bad? Yes (But it's highly improved for approx. 3 weeks after my infusion, and
my attitude remains positive and hopeful that with the help of Tysabri, I'll completely gain back my balance one day );

Are both my feet still numb? Yes (But I can still curl my toes on both feet and move them from side to side a little bit
for approx. 3 weeks after my infusion, and my attitude remains positive and hopeful that with the help of Tysabri, I'll be able to lift my feet more than 1" one day );

Is my optic neuritis better in my right eye? Hell yeah
...for approx. 2 weeks after my infusion, I can't see the TV with my glasses on and have to take them off to see the TV clearly, but alas, I need them again going into the 3rd week after my infusion - I think part of this is due to 2 other factors - all the steroid damage I've had over the years, and age (I think I need bifocals now - ARG! )

Is my memory better? You betcha, and it remains so for approx. 3 weeks after my infusion.
( Wait, what were we just talking about?
)

Is my slurred speech better? Yeth, and it has remained so. ( Was that a lisp I just heard?
)

Are my bladder issues better? Yes, vast improvement, and it has also remained so
).

Is my energy level better? Yes, definitely, for approx. 3 weeks after my infusion
.

Is my Quality of Life better? Abso-friggin-lutely!
Without Tysabri, I was rapidly approaching SPMS without relapses and becoming bedridden...helpless and hopeless, and ineligible for Tysabri.

With Tysabri, for me, HOPE SPRINGS ETERNAL that my body still has a fighting chance to regain or even partially regain what has been lost to MS, that my body still has a fighting chance to heal or even partially heal itself from the temporary damage of MS, at the very least - maintain my disability level and not get worse, and best of all, when I start to feel my small improvements
(for now-heehee) fading away about 3 weeks after my infusion, I can tell myself: "Lauren, hold on..only one more week...soon you will get back to where you were 3 weeks ago, and there might even be a surprise waiting for you (a new improvement!)"...,

Tysabri = Hope? For me, oooooooh yeeeeeeah!


Now, for those unfamiliar to Tysabri and/or MS, first let me say that the following is not medical advice regarding either Tysabri or MS. These are only my experiences and layperson's opinions after having MS for 31 years, and from having 7 infusions of Tysabri since 10/16/06.

Tysabri works differently than the older generation MS medications (the ABCRs), as Tysabri is specifically designed as a Selective Adhesion Molecule (S.A.M.) that attaches itself to the T-cells (inflammation cells) that attempt to cross the Blood Brain Barrier (BBB) and enter the Central Nervous System (CNS) which is comprised of our brain, optic nerves, and spine.

This is when the T-cells see our myelin (the protective coating for our nerves) as foreign, and starts to attack it, leaving scarring (sclerosis) that shows up most of the time on a MRI as white/grey spots, which eventually leads to axonal loss (i.e., damage resulting in disability). It is also explained as a misfiring of nerve signals to the receiving nerves (which can result in such symptoms as numbness, tingling, weakness, temp. or permanent optic neuritis, fatigue, bladder problems, balance problems, and even paralysis sometimes, etc.)

Generally speaking, if lesions/spots are showing on MRI and lit up like lightbulbs, that usually means the disease process/lesion/relapse is active.

Further, even if a person still feels great while not on a Disease Modifying Drug (DMD), they can still have "silent lesions" forming with no resulting disabilities at that time...unfortunately, due to the nature of MS being a chronic and progressive disease, the resulting disabilities usually show up later, and by then, the resulting damage might be permanent. This is why most neurologists want the patient to start on one of the various DMDs, as soon as possible.

Tysabri's mechanism of action against MS: When Tysabri attaches itself to the damaging T-cells, it prevents a majority of them from crossing the BBB and entering the CNS. And even if a few do get across the BBB and enter the CNS, Tysabri is able to migrate (move) them away from our myelin, providing us with double coverage from those pesky, damaging T-cells.

This accounts for part of the fantastic studies recently reported re: Natalizumab (Tysabri) and it affect on Optic Neuritis


Tysabri basically stops/slows the cascading effects of the continuous onslaught of damaging T-cells from attacking our myelin, which in turn, gives our body an opportunity to try and heal itself (providing the damage is not permanent).

Regarding various mis-information circulating all over the web about Tysabri, please note: Pursuant to the approved FDA labeling, Tysabri is for patients with relapsing forms of MS that generally have not responded to, or cannot tolerate, other MS treatments. What this means is that Tysabri is a first line (like the ABCRs) AND/OR a second line defense/treatment for MS.

The phrase "cannot tolerate" can be interpreted by the treating physican to include their "needle-phobic" patients...or patients with "aggressive forms of relapsing MS"... , therefore, the patient does NOT necessarily have to fail one med first in order to have Tysabri. Pursuant to Dr. Katz and Dr. Temple of the FDA, they explained to the public in a Conference Call shortly after their Advisory Committee hearings in March, 2006 that the FDA's decision/language above was purposely left open and left up to the treating physican (as it should be, in my humble opinion).

With regard to Tysabri and the use of steroids to treat a relapse: According to the TOUCH protocol, the patient CAN have SHORT courses of steroids (IVSM or Prednisone), to treat a relapse/flare-up while on Tysabri (see the NMSS website for verification and further clarification). Again, these decisions should be left up to the patient's treating physican, as the FDA intended.


Lastly, regarding PML: The experts and authors of the world renowned New England Journal of Medicine attributes PML to diminished immunosurveillance (or a very low immune system), and
not to Tysabri.

Additionally, think about this for just a minute: there were 3 trial patients that developed PML: 2 of which were given Tysabri
in combination with Avonex (which is another immunomodulator), and 1 Crohn's patient that had a previous severely compromised immune system due to being on Azathioprine for 6 years. Of these 3 patients - 2 died, and neither of them had MS.

This means that out of approx. 3,000 trial patients that had a confirmed dx of MS and Crohn's disease, that did not have a compromised immune system, and received Tysabri as a monotherapy (by itself), and the approx. 5,000 general population patients that also met the above criteria (me included) from 11/04 to 2/05, that's 8,000 patients total,
plus the additional approx. 8,000 patients that have received Tysabri since it's relaunch in 2006 (with the same above criteria) - that's a grand total of 16,000 patients - get this: not one of us developed PML and died - which is a risk factor of ZERO in 16,000 or 0:16,000.

Each patient should discuss Tysabri with their treating physican, and weigh the minimal 0.1% risk of PML vs. it's enormous benefits of superior efficacy of 67%.


The above is not meant to scare anyone (because we are all different and there's no "one size fits all" explanation for a complicated disease like MS, nor a complex medication like Tysabri)- it's only meant to pass on my experiences with Tysabri and MS, and to try and help educate others in their disease...again, the above is not to be construed as medical advice by any means...it's only my (layperson's) attempt to briefly and very simply explain Tysabri's mechanism of action against MS.

Remember dearhearts, Knowledge Is Power - MS symptoms are like snowflakes...all uniquely different for each of us - and yet - all similarly the same.

What we choose to do with the information we learn about our disease and its available therapies can make the difference between a lifetime of pain, suffering, disabilities, fear and confusion - or a lifetime filled with hope, possibilities, and a better Quality of Life.


It's our choice.

((((((((hugs to all))))))))

With much Love,

Lauren

A very proud member of www.MSpatientsforchoice.org

12 Comments:

  • At 6:26 AM, Anonymous Shannon said…

    I got Tysabri last Wednesday!!!! Nothing yet but a few hives - but it's worth it! I was so nervous for nothing...thanks so much for what you do on here!

    Now if my doctors only had your bedside manner...

     
  • At 8:54 AM, Blogger Brooke has MS said…

    Hi Lauren,

    It is Brooke I just wanted to HI!
    I am happy you got your 7th infusion! And all is well. Happy Friday...oh yeah this month I have to get my tysabri 3 days late. Do you think I will feel funny?

    XOXOX-Brooke

     
  • At 9:03 AM, Blogger Gretchen Steele said…

    I was so glad to read this post....I have been defending Tysabri to my friends and family who have been so quick to say..it isn't working...you had a relapse...it isn't working....you gait is crappy...of course my gait is crppy...I just had a freakin relapse people! I feel better after each infusion...my relapse..well I have one every spring...and it wasn't as bad as the others I have.....What may seem like nothing to folks who don't have MS is a big deal to me....hey I can almost pour out of a gallon milk jug with making a mess that cat enjoys cleaning up!
    Tysabri is the first disease modifying drug that hasn't made me horrifically ill and I can actually see improvement, no matter how small it may seem...it's an improvement ! Next dose Monday....whooppeee!

     
  • At 11:53 AM, Blogger CC said…

    I'm next! I hope to start my infusions early May. The insurance company is the only road block left. Congrats Lauren!! You are doing great!

     
  • At 4:33 AM, Anonymous Anonymous said…

    Lauren, I love the way you blaze that trail for others. It's great to read your optimistic words. I look forward to your blog entries in the future. I know you find enjoyment in each day.

    Deb

     
  • At 1:44 PM, Blogger Lauren said…

    (((((((Brooke)))))) thank you dearheart....why do you have to wait 3 days? Arg....but I think (hope)you will be just fine, you 'youngins' are resilient don'tcha know?

    (((hugs)))

    Lauren :)

     
  • At 1:51 PM, Blogger Lauren said…

    (((((Gretchen)))))..."of course my gait is crppy...I just had a freakin relapse people!" LOL, yeah, until they get MS, they don't "get" MS..but GOOD for you g/f, give 'em hell, errr I mean heck and congrats on your improvements!

    Keep me posted after your next infusion, okie dokie artichokie? ;)

    Lauren

     
  • At 1:54 PM, Blogger Lauren said…

    Thanks so much Courtney...I'll be on the sidelines cheering you on when you do!

    (((((hugs)))))

    Lauren :)

     
  • At 1:57 PM, Blogger Lauren said…

    Awww thank you so much Deb, how is your daughter doing on Tysabri? (Well, I hope and pray)

    Lauren :)

     
  • At 11:28 AM, Blogger jaempress said…

    I just had my second infusion of Tysabri and I am not feeling well. I feel like I am getting more tingling and heavyness in my legs. I wonder if this is normal for the first couple of infusions. I typically have mild symptoms of MS and this time around just seems like something isn't right. My husband keeps telling me to give it time but I am so concerned and worried that this drug isn't for me. I hear all these great stories of people feeling better right after and that has not been the case for me. My nuero is going to check to make sure I am not having a low antibody reaction to the drug. It just seems all too weird, I feel more exhausted and my joints hurt and typically I just have a few tingling here and there and I am able to run and do my normal activities. Now I can do the same it just seems like the tingling is far more intense. The only reason I am on Tysabri is because I cannot tolerate the needle pokes since I am a tiny person my nuero is concerned that I was not on the right amount of dosage of rebif since I was not able to inject 3 times a week. Any help on what I am feeling.

     
  • At 2:27 PM, Anonymous Anonymous said…

    thank you 4 your website thats flled with such great things....I have been on Avonex since it came out and now have been directed by my new doc to go on tysabari ...once again your positive attitude is a delight!
    g

     
  • At 9:33 AM, Blogger Victoria said…

    I had my first infusion Friday and I feel like I have flu. My throats killing me and so is my head. Gonna keep going though

     

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