I Don't "Do" Yellow.


I had my first treatment with Tysabri, the newest drug on the market used to battle MS. It’s a once-a-month infusion (IV hook-up), administered in the doctor’s office. When my doctor talked to me about this new drug, he said “it will stop MS in its tracks”. However, I was still hesitant and had been vacillating for the past year as to whether I should switch from my Avonex (weekly injections) to Tysabri. I felt like “if it ain’t broken, why mess with it”. But, recently I have noticed that my feet are numb more often and there is increased spascicity in the muscles in my thighs. spasticity

Tysabri was first approved in 2004 but was temporarily taken off the market in 2005 over concerns about a serious brain infection, known as progressive multifocal leukoencephalopathy (PML). It seems that three patients developed the disorder, characterized by destruction of the myelin sheath that covers nerve cells. To put this in everyday language, the brain deteriorates. There is no cure for PML, nor is there currently an effective treatment. The course of PML is relentlessly progressive. Death usually occurs between 1 and 4 months after onset.

However, my doctor reassured me, telling me that the patients whom died from this were on an additional MS treatment and that it was the TWO TREATMENTS in COMBINATION that caused the PML. So, in the end, I felt better and decided to switch to Tysabri.

Now, today I read a report on the internet that Tysabri is also be linked to liver damage in some patients. In a letter to all physicians prescribing Tysabri, BIOGEN (manufacturer of Tysabri) reports that there have been “clinically significant" reports of liver injury in patients being treated with Tysabri. The letter instructed doctors to stop drug treatment if patients show signs of liver injury including jaundice. (What is jaundice?)

A Biogen spokeswoman, said the rate of liver injuries is less than one in 1,000 patients. As of the end of December, about 21,000 patients had been treated with Tysabri. None of the injuries required a liver transplant, she said. (Oh, I feel so much better now.)

Okay, here’s where I start getting “creeped out” and my skepticism takes over. Can I trust the BIOGEN SPOKESWOMAN? Is the spokeswoman for biogen an ADVOCATE for the PATIENT or is she an ADVOCATE for the PHARMACEUTICAL company.

My suspicion is magnified due to the fact that I had already know that there was a class action lawsuit filed when Tysabri was first pulled from the market.

Due to this lawsuit, shares of Biogen fell 42.44 percent, on unusually high trading volume. Later, claims were made of insider trading at Biogen when Thomas Bucknum, Executive Vice President and General Counsel began selling his stock ON THE DAY THE TYSABRI RECALL WAS ANNOUNCED.

Now, this is what really pisses me off; that I am forced to consider whether to pursue a course of treatment that could KILL ME and then read about what effect this drug has on the market and ultimately……SOMEBODY’S BANK ACCOUNT.

So, what should I do? I feel like I’m sitting here, keeping my fingers crossed that the Tysabri doesn't kill me. Quite honestly, I doubt I’ll lose any sleep and I certainly won’t spend my days obsessing over anything negative that might happen. Why would I? What can I do about any of it? It is what it is. (This is the new ZEN me.) It’s not like I can stop treatment completely. I have to choose ONE and each carries its own risks (as do ALL medicines).

I have been with this MS Center (one of the best in the country) and with a doctor that I trust implicitly since I was diagnosed in 2000. I ask questions, I do my own research and (with the help of my husband), I carefully consider all my options. And, we both agree; having NO TREATMENT is NOT an option, it just isn't.

And now, my husband and I, we're just sitting around waiting to see if I start turning YELLOW.

Comments

Stephen said…
found your blog in my daily "google alert". i just did tysabri #10, and i don't think it's done anything for me (but i think i've had secondary progressive all the time, which no medication works for). my attitude was that tysabri was dramatically more effective than any of the other meds, and the chances for significant liver damage are so low (most meds are hard on the liver), so i didn't really hesitate. i didn't really care what biogen said, i trusted my neuro. anyway, get those blood tests, and good luck!
Nancy said…
Thanks, Stephen for you comments re: Tysabri..

I've had two infusions so far....and, I don't feel any worse/ any better.

One thing I am SURE OF...I fee my best when I'm QUIET and free from STRESS.

The more STIMULI in my life...it seems my brain shuts down.

Hope you are well.
Unknown said…
thank you. i'm 21 and starting tysabri because avonex and copaxone's side effects are wrecking me. i'm terrified...
Nancy said…
Tina,

Sorry....obviously I don't check in on this blog often enough. Sorry I missed your comment until now. I hope things are going well for you. I know MS is scary, especially for one so young. If you comment again, I'll share my personal email with you...I'll be happy to answer any questions you have re: tysabri and MS.

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