21st April 2007
[FONT="Georgia"][COLOR="Blue"]These are my opinions and experiences only (not medical advice) with MS & Tysabri.
7th Tysabri Infusion Update:
I had my 7th Tysabri infusion on 4/18/07, and right now, right at this moment, I feel terrific! Woohoo!
I have read a small handful of posts 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 3 things - 1) The current level of your MS and disability did not happen overnight, therefore you must learn patience in your Tysabri treatments; 2) Tysabri is not a cure for MS or for your symptoms (especially if those disabilities are permanent); 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: "TYSABRIŽ is indicated as monotherapy for the treatment of patients with relapsing forms of multiple sclerosis [COLOR="Red"]to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations."
Which is why I firmly believe (imho) 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 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 I still have hope that 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, but I still have hope that I'll completely and/or significantly 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 a bit for approx. 3 weeks after my infusion, but again, I still have hope of walking one day);
Is my optic neuritis better in my right eye? Hell yeah, for approx. 2 weeks after my infusion, I can't use my glasses to watch TV, 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 - :mad: 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? lol)
Is my slurred speech better? Yeth, and sustained. (Was that a lisp I just heard? heehee)
Are my bladder issues better? Yes, vast improvement, and sustained.
Is my energy level better? Yes, definitely, for approx. 3 weeks after my infusion .
Is my Quality of Life better? [COLOR="Red"]Abso-friggin-lutely! :D
Without Tysabri, I was rapidly approaching SPMS without relapses and becoming bedridden...helpless and hopeless, and ineligible for Tysabri. :(
With Tysabri, for me, [COLOR="Red"]HOPE SPRINGS ETERNAL that my body still has a fighting chance to regain/heal itself temp. or even partially regain what has been lost to MS providing the damage isn't permanent, and at the very least, maintain my disability level and not get worse. When I start to feel my small improvements 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 ([COLOR="Red"]a new improvement!)"
Tysabri = Hope? For me, [COLOR="Red"]oooh yeeah!
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.
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) & 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 (damage resulting in disability).
It is also explained as a misfiring of nerve signals to the receiving nerves which can result in various symptoms/disabilities.
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.
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 & 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 [COLOR="Red"]relapsing forms of MS that generally have not responded to, or cannot tolerate, other MS treatments. What this means is that Tysabri is a [COLOR="Red"]first line (like the ABCRs) AND/OR a [COLOR="Red"]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.
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 site).
Lastly, regarding PML: The experts and authors of the world renowned NEJM attributes PML to diminished immunosurveillance (or a very low immune system), and [COLOR="Red"]not to Tysabri.
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 [COLOR="Red"]neither of them had MS.
Therefore, out of approx. 3,000 trial pts 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 gen. pop. pts that also met the above criteria (me included) from 11/04 to 2/05, that's 8,000 pts total, plus the additional approx. 8,000 pts that have received Tysabri since it's relaunch in 2006 (with the same above criteria) - for a [COLOR="Red"]grand total of 16,000 pts - 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 0.1% risk of PML vs. it's enormous benefits.
The above is not meant to scare anyone (we are all different-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 share my experiences with Tysabri & MS, and to try and help support & educate others in their disease & briefly/very simply explain Tysabri's mechanism of action against MS.
Imho, Knowledge Is Power. MS symptoms are like snowflakes-all uniquely different for each of us-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))))))))
Lauren :) [/FONT]
7th Tysabri Infusion Update:
I had my 7th Tysabri infusion on 4/18/07, and right now, right at this moment, I feel terrific! Woohoo!
I have read a small handful of posts 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 3 things - 1) The current level of your MS and disability did not happen overnight, therefore you must learn patience in your Tysabri treatments; 2) Tysabri is not a cure for MS or for your symptoms (especially if those disabilities are permanent); 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: "TYSABRIŽ is indicated as monotherapy for the treatment of patients with relapsing forms of multiple sclerosis [COLOR="Red"]to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations."
Which is why I firmly believe (imho) 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 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 I still have hope that 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, but I still have hope that I'll completely and/or significantly 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 a bit for approx. 3 weeks after my infusion, but again, I still have hope of walking one day);
Is my optic neuritis better in my right eye? Hell yeah, for approx. 2 weeks after my infusion, I can't use my glasses to watch TV, 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 - :mad: 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? lol)
Is my slurred speech better? Yeth, and sustained. (Was that a lisp I just heard? heehee)
Are my bladder issues better? Yes, vast improvement, and sustained.
Is my energy level better? Yes, definitely, for approx. 3 weeks after my infusion .
Is my Quality of Life better? [COLOR="Red"]Abso-friggin-lutely! :D
Without Tysabri, I was rapidly approaching SPMS without relapses and becoming bedridden...helpless and hopeless, and ineligible for Tysabri. :(
With Tysabri, for me, [COLOR="Red"]HOPE SPRINGS ETERNAL that my body still has a fighting chance to regain/heal itself temp. or even partially regain what has been lost to MS providing the damage isn't permanent, and at the very least, maintain my disability level and not get worse. When I start to feel my small improvements 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 ([COLOR="Red"]a new improvement!)"
Tysabri = Hope? For me, [COLOR="Red"]oooh yeeah!
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.
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) & 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 (damage resulting in disability).
It is also explained as a misfiring of nerve signals to the receiving nerves which can result in various symptoms/disabilities.
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.
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 & 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 [COLOR="Red"]relapsing forms of MS that generally have not responded to, or cannot tolerate, other MS treatments. What this means is that Tysabri is a [COLOR="Red"]first line (like the ABCRs) AND/OR a [COLOR="Red"]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.
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 site).
Lastly, regarding PML: The experts and authors of the world renowned NEJM attributes PML to diminished immunosurveillance (or a very low immune system), and [COLOR="Red"]not to Tysabri.
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 [COLOR="Red"]neither of them had MS.
Therefore, out of approx. 3,000 trial pts 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 gen. pop. pts that also met the above criteria (me included) from 11/04 to 2/05, that's 8,000 pts total, plus the additional approx. 8,000 pts that have received Tysabri since it's relaunch in 2006 (with the same above criteria) - for a [COLOR="Red"]grand total of 16,000 pts - 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 0.1% risk of PML vs. it's enormous benefits.
The above is not meant to scare anyone (we are all different-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 share my experiences with Tysabri & MS, and to try and help support & educate others in their disease & briefly/very simply explain Tysabri's mechanism of action against MS.
Imho, Knowledge Is Power. MS symptoms are like snowflakes-all uniquely different for each of us-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))))))))
Lauren :) [/FONT]