Tysabri is like sailing Puget Sound........

Taking Tysabri is like sailing Puget Sound........

This post is a tough one to write.  It was tough in the doctor’s office when Julie and I made the decision to go ahead w/ Tysabri treatment (2006).

Taking Tysabri is still mentally tough to this day.

Supposedly there are some people who read this blog that care about me. I should be careful of what I say…….right?  This blog is primarily about awareness.  So let’s keep it there,… shall we?

First off.  “Wiki” time:

http://en.wikipedia.org/wiki/Progressive_multifocal_leukoencephalopathy

Here is my two cents on the latest PML scare.

As the number of PML cases rise…….The number of people who make the decision to start Tysabri also rise incredibility.  Even with the latest PML findings,…Tysabri’s popularity has taken off.  The risk factor has either stayed the same or even lowered due to the new massive numbers that are now “flocking” to try the latest in MS therapy.  My JC virus (the PML trigger) risk is monitored very closely. And part of my reasoning for Stem Cell was primarily to get away from this constant PML scare.  I’m hopeful that MSC treatment will get me out of the way of Tysabri’s grip one day.

Eyes wide open to the risk……always……

It’s a double edge sword though………

Plain and simple: Tysabri has been good to me!!!!! It almost seems that it was tailor made for my MS.  Dealing w/ all symptoms except………Mobility.

I have followed this drug since its infancy……

It used to be called Antegren……in 1996 I wanted so badly to be in a study at the University of  Washington for Antegren.  I had read everything I could about the drug.  I wanted to be part of that study so bad.  I knew this was the drug for me. I couldn’t wait for its release. Finally…in 2006…..my wish was granted.  I started it and it immediately the drug started to do its job.  It got me back into the workforce.  It gave me my life back.  Maybe saved my marriage.  Stabled a very unstable MS “ship” that seemed to be sinking rapidly just before I started it. 

Before Tysabri I had thoughts of permanently disability.  Walking/mobility that was quickly going into the toilet. Mental unstableness. Massive Fatigue. Sleeping all day. On and on the MS symptom list grew.

Now……….

Why is it that …I can’t wait to be out of the drugs way.

Simple:

Its stories like these.

Links:

1st from a medical standpoint:

http://app2.e2ma.net/campaign/31451.748c4f23ddf69d00cfbe3c647d0a6ea6#News

And a link from a pharmaceutical manufacturer’s ethical standpoint:

http://industry.bnet.com/pharma/10005261/fda-looking-to-regulate-biogens-invisible-salesforce/

It maybe a tough read for some that are not familiar w/ the drugs history. Here is some Wiki time for those not in the know.

Wiki link:  (remember: Natalizumab is Tysabri)

http://en.wikipedia.org/wiki/Antegren

Here are some of highlights from the business ethics article 

“one might speculate that the invisible finger of Biogen was behind the explosive online propaganda campaign (emphasizing the drug’s benefits) that erupted following the 23rd and 24th confirmed cases of PML in patients taking Tysabri (in October – early November).”

“By the way, I was just informed that PML-patient # 14 passed earlier this week. Funny thing — her death didn’t make headlines — anywhere. If confirmed as the fifth PML fatality related to drug therapy, how ironic that patient empowerment has already been betrayed by its chosen medium.

Again…….This post is not meant to scare…….Just be aware.  Know what your getting into before you make the leap to this drug.

Things are not always as they seem………..

The “risk” thoughts are always there……..always in the back of your mind ……….always…..

“What if….?”

Be Well

Todd

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