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Friday, May 18, 2012

TYSABRI TREATMENT WEEKEND

I have found that many patients with multiple sclerosis, especially celebrities with the disease are reluctant or do not tell which therapeutic treatment that they are currently on.  Well, I am on Tysabri and today was treatment day.  Oh...what joy!

Tysabri is one of the newer drugs for advanced stages of MS.  A fun fact to know about Tysabri is that the FDA granted it a black box due to the potential lethality of the drug.  To better understand all these drug treatments lets look at what the drugs do.  The current theory is the people who have multiple sclerosis have an immune system that is in overdrive.  Hence, ALL treatments for multiple sclerosis compromise, lessen, weaken, crumble it to all hell your immune system.  So since our immune systems are "compromised", that is the PC (politically correct) word that I should use, means that we are much, MUCH more likely to catch just about anything. Again, what joy! 

All treatments are used for the purpose of trying to stave off relapses or exacerbations and to try to halt the progression.  Now, will all treatments there are side effects, flu like symptoms, weakness, nausea, and chronic fatigue.  With Tysabri and the black box warning is because of a virus nickname, PML, which is short for   progressive multifocal leukoencephalopath.  They do have a current blood test to see if you have a antibody in your system called an anti-JVC antibody.  Now, PML is a rare but very serious brain infection that usually leads to death or severe disability in people with MS.  Again, your increase for this is is you have this JVC antibody, then you should not take Tysabri. Another risk factor for PML is the use of immunosuppressant therapies taken prior to starting on Tysabri.  And, the third risk factor is the longer that you are on Tysabri. The test for this drug was for two years.

I was on Tysabri before when it first came out.  I took it along with another therapy called Rebif.  This combination made me sick as a dog.  Then cases with PML started happening and there was loss of life and Biogen, the maker of Tysabri pulled it off the market.  I went back on Rebif and continued to worsen, and was then put back on Tysabri and Tysabri only.  I still progressed, still relapsed and was pulled off of the drug after being on it for two years.  I was pretty my without a treatment for a total of one year, which progressed my MS and has lead me to debilitating pain which is daily.  Now, I am back on Tysabri, but I know that the two year mark is closing in on me again.  Again, what will I do.  I don't know. I do know is that out of the three risk factors to PML, I have two.  All I know is that I have to keep God ahead of this. This is much too big for me. 

Now, that being said.  I am, due to my treatment, sick as a dog, and about to fall out.  Treatment weekends are horrible. But, God is able, and I'm here for my family.  "My head is bloodied, but unbowed."

Know more about Tysabri @ http://www.tysabri.com/index.xml

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