Living With MS

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

Friday, March 19, 2010




My Tysabri Diary...,

Hi everyone, I completed my 45th Tysabri infusion on Tuesday 3/16, all went well as usual. I saw my neurologist the day before on the 15th, and he was very pleased that my progression has slowed down considerably. He renewed my Tysabri prescription for another six months, woo hoo! He said that my blood tests looked fine, and he won't order more blood tests until next year unless things change--that was good too. He was also testing my cognitive function/memory, and I aced every question he asked me, including the three questions asked earlier that I was supposed to remember

My infusion center has another new Tysabri patient; I'm not sure how many they have now--but it seems to me that each month ago there, there is another new Tysabri patient.

I received an e-mail from a friend of mine who had an acquaintance that was recently diagnosed with MS. He asked me to talk with him and provide him with a bunch of different links I had for newcomers to the disease. I haven't heard back from him yet, so he is probably still researching the resources that I provided to him. I would, however, like to share an e-mail that I received from another MS patient just recently diagnosed in 2009 & whose doctor wants to switch her over to Tysabri, and she was pretty nervous..., also my reply to her is included below.

Have a great weekend everyone!

((((hugs))))

Love, Lauren :)


*****
Hey Lauren!

I found your group on Facebook. I would love it if you would share the information that you have on Tysabri with me. I was diagnosed in September 09. I tried Rebif and it was a horrible experience! My neuro then put me on Copaxone. I've been on it for only about 8 weeks. I had my first MRI "check up" last week since it has been 6 months since I was diagnosed. I have 3 new lesions. The neuro said that was a lot for the first six months (I can't find any research about what the "normal" number of lesions is during a certain time period. Do you happen to have any idea?). My neuro suggested that I go on Tysabri. I am super nervous so I am trying to learn as much as I can about the drug.

Thank you so much for your advice and knowledge,

XXX


Hi XXX, it is so nice to meet you!

Since you were recently diagnosed in late 2009, obviously Rebif was not working for you (interferons have very harsh side effects-I know, I was previously on Avonex, and then I moved to Copaxone)...., to have 3 new lesions in only six months, that's quite a few for a newly diagnosed MS patient. I don't have any specific link I can give you for that kind of information, but since I've had MS for more than 35 years, trust me, that's a lot of lesions for only six months, which leads me to believe you have an aggressive form of MS (I'm not a doctor, but I'll take a guess that you are Progressive Relapsing or PRMS perhaps?).

See: http://www.nationalmssociety.org/about-multiple-sclerosis/relapsing-ms/index.aspx, which states:
"Progressive-Relapsing MS --(PRMS)--the least common disease course--is characterized by steadily worsening disease from the beginning, but with occasional relapses along the way. People with this form of MS may or may not experiencesome recovery following these attacks, but the disease course continues to progress without remissions. PRMS is considered to be both a progressive and a relapsing form of the disease because experience steady disease progression and relapses." PRMS is also known as "an aggressive form of MS".

You also stated, "My neuro suggested that I go on Tysabri. I am super nervous so I am trying to learn as much as I can about the drug."..., you have a smart neurologist since the ABCRs (Avonex, Betaseron, Copaxone, & Rebif) have only 29% to 34% effectiveness [respectively] at slowing the progression of MS down & preventing further relapses, you obviously need a more effective Disease Modifying Drug (DMD). Tysabri is 68% more effective at slowing the disease process down and preventing further relapses. I've been on Tysabri for more than three years, and I haven't had a relapse since October 2006!

And I don't understand why you are super nervous about Tysabri--if you are concerned about PML (Progressive Multifocal Leukoencephalopathy), that is not caused by Tysabri, a compromised immune system (a very low immune system) can cause the person that carries the dormant JC virus to ultimately develop into PML.

Most MS patients have a very strong and active immune system because that is why we keep having relapses. If you were previously on medications that can last in the body for a long time such as Azathioprine/Imuran, Remicade, Novantrone, CellCept, Raptiva, etc. or treatments that drastically reduce the function of your immune system such as IVIG treatments, regular monthly pulse steroids, etc., all of those can potentially lower your immune system to where it becomes compromised, and from what you've told me, you haven't had any of those medications or treatments, so you really don't have anything to fear.

Now if you want a few links to read up on accurate Tysabri data and information, check the following out:

My personal blog (which is also my Tysabri diary), and has tons of links regarding Tysabri: Living With MS (Lauren's Tysabri Diary)

Information from the expert authors of the New England Journal of Medicine regarding PML: NEJM - Conclusions re: PML

Tysabri Brochure

TYSABRI.com (Natalizumab)

TYSABRI® Has Sustained Effect on Relapse Rate for up to Three Years

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

TYSABRI® Demonstrate Significant Improvements in QoL

TYSABRI® Reduces Vision Loss in MS

TYSABRI® Demonstrates Improvement in Cognitive Function

TYSABRI® Demonstrates Sustained Improvement in Function

TYSABRI® Demonstrate Significant Reduction in Steroid Use and Hospitalizations

My personal favorite: TYSABRI® Promotes Remyelination & Suggests Improvements In Symptoms TYSABRI® Provides Greater Treatment Satisfaction As Reported By MS Patients

Have I given you enough information to research for now? (Heehee)

You can write me at any time, and I will be more than happy to try and help you as much as I can. I need to go do my physical therapy now, so take care dearheart!

Lauren :)

1 Comments:

  • At 2:29 PM, Anonymous Lynn Tanner said…

    Hi Lauren, I am not on the computer much, but I love reading all of your information and your dedication to helping others in the MS community. You are such an inspiration and you are so knowledgeable. Thank you for all of the good information!! You are an excellent source of accurate information about Tysabri and I love your enthusiasm. I too love Tysabri and how it has changed my life. I just went in last week for my 88th infusion and I have never had a relapse. I began in the trial study in 4/02. Keep up your good work dear friend. I would love to meet you someday. Thank you for everything! Love, Lynn Tanner

     

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