Living With MS

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

Monday, April 05, 2010



Happy Easter everyone, on this blessed day I would like to share an
e-mail that I received from a patient considering Tysabri therapy, and
my answer to him (I believe he's going to switch to Tysabri therapy),
and a wonderful video (link and lyrics below) that celebrates Easter for
those of us who believe.

And even if you don't believe in Easter, I wish all of you many, many
blessings on this wonderful day!

((((hugs to everyone))))

Love, Lauren :)



Subj: tysabri
Date: 4/2/2010 8:18:45 PM Pacific Daylight Time
From:
To: LGLBGL2003@AOL.COM
Sent from the Internet (Details)


Hi Lauren.
My names Craig im 31 years old, and was DX in dec 2006, been on Rebif for a like almost the whole time, and now recently, well on tuesday my doc, says that the Rebif isnt working that im pretty much injecting water in my body. He asked me if i wanted to take Tysabri, and told me about PML, which yeah i will be honest it worried me a little bit, but its not my main concern really, its just the feeling is this right for me, ive been reading blogs of yours and others, and im seeing a lot of great things about it, and i love the fact of once a month getting it, im sick of the shots, cause the doctor now said to try copaxone while i make my descion on it, and shots everyday is definately not me, even knowing im hearing some good things about it, but anyway, to kinda get to the point, ive been trying to get peoples input on what i should do, and since reading your blogs, you seem like you might no more about this than some doctors might know, and figured i had nothing to lose if i send you an email, to kinda get your input on this whole thing, basically do you think i should go on tysabri right away, or should i try copaxone a while. any help would be great. thanks
Craig
p.s. physically im doing alright, my legs get weak alot, im tired alot, my memory is so so, i kinda forget the short term stuff, but i seem to remember everything, just not when i want to, maybe im just getting old,lol, i just ache alot and cant do what i used to do, anyways i hope that might help in giving me any ideas that you may have too, thanks again

Subj: Re: tysabri
Date: 4/3/2010 2:40:57 PM Pacific Daylight Time
From: LGLBGL2003@aol.com
To:
Sent from the Internet (Details)


Hi Craig, it's so nice to meet you! And thanks so much for your e-mail..., I am more than happy to try and answer your questions:


In a message dated 4/2/2010 8:18:45 PM Pacific Daylight Time, XXX writes:
since reading your blogs, you seem like you might no more about this than some doctors might know
Oh my gosh, you are too funny Craig! I have been researching and studying this drug since 2000, have some neurologists as friends that have patients on Tysabri, and met the researcher/scientist/doctor that discovered Tysabri--so I do have a little bit of knowledge about Tysabri, heehee.

As far as going on Copaxone (the least effective of the ABCRs, and that's if it starts working after six months), why risk have a major relapse during that time? The ABCRs are only 29%-34% effective at preventing further relapses and slowing the disease process down, whereas Tysabri is 68% effective at preventing further relapses, slowing the disease process down, improving the patient's Quality of Life, and has proven data showing improvements in some patients. You might want to read the following proven data about Tysabri:

TYSABRI® Demonstrate Significant Improvements in QoL

TYSABRI® Demonstrates Sustained Improvement in Function

TYSABRI® Promotes Remyelination & Suggests Improvements In Symptoms

TYSABRI® Provides Greater Treatment Satisfaction As Reported By MS Patients

***ABCR Comparison & TYSABRI® Shows Reduction in Steroid Use/Hospitalizations

Tysabri Brochure

As far as PML is concerned, this occurs when the immune system becomes too low to fight any dormant JC virus you may carry in your system. Most researchers now believe that 50% of the general population (including MS patients) carries the dormant JC virus-which means that 50% do not carry the dormant virus.

Medications such as Azathioprine/Imuran, Methotrexate, Novantrone, CellCept, Raptiva, Remicade, Rituxin, etc. have all been associated with PML because their effects can last in the body for a very long time even though discontinued by the patient. Even treatments such as IVIG treatments, regular pulse steroids and the like, can severely lower the immune system.

Therefore, from what you tell me Craig, you haven't had any of these medications or treatments previously, so I really would not be concerned at all about PML. There are currently over 60,000 patients on Tysabri therapy, do you think any of them are concerned about PML? (That was a silly-rhetorical question-heehee).

Lastly, since you were recently diagnosed with MS within the last 3 1/2 years, and you are still fairly young, in my opinion (remember, I am not a doctor) you stand a very good chance of being a patient in the category that experiences drastic improvements since the damage done from your previous relapses is probably/hopefully not permanent but only temporary.

I have had 45 Tysabri infusions and experience almost zero side effects from Tysabri, whereas the interferons (Avonex, Betaseron, & Rebif) all have flulike symptoms as side effects, and Copaxone can cause welts/lumps at the injection sites as well as anaphylactic shock, etc.

Please keep me informed as to what you and your doctor decide Craig, and if I can be of any help, please do not hesitate to write me at any time.

In the meantime, I send you many, many supportive thoughts and prayers--

Lauren :)
***
Here is the beautiful video I mentioned above ( link is below):

How Deep Is the Father's Love for Us

How deep the Father's love for us
How vast beyond all measure
That He should give His only Son
To make a wretch His treasure

How great the pain of searing loss
The Father turns His face away
As wounds which mar the Chosen One
Bring many sons to glory

Behold the man upon a cross
My sin upon His shoulders
Ashamed I hear my mocking voice
Call out among the scoffers

It was my sin that held Him there
Until it was accomplished
His dying breath has brought me life
I know that it is finished

I will nost boast in anything
No gifts, no power, no wisdom
But I will boast in Jesus Christ
His death and resurrection

Why should I gain from His reward
I cannot give an answer
But this I know with all my heart
His wounds have paid my ransom

http://www.youtube.com/watch?v=MDUbq3iAocg&feature=related

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