Wednesday, November 19, 2008

Not Dead Yet

Last time I saw my neurologist, he suggested I try Tysabri. I have been using Avonex for about 10 years. Both are "disease-modifying drugs" for MS.

I chose Avonex because it is a once-per-week injection. The day after my injection, I always have flu-like symptoms: I feel tired and weak, like I'm under water. There are other medications that require more frequent injections. Doing the shot more frequently (and perhaps feeling crummy more frequently) has never had a strong appeal for me, even though some doctors think Avonex is not the most effective drug.

All the disease modifying drugs have the promise of delaying the disabling effects of MS. This has always seemed to me way too easy for the pharmaceutical companies: "Take this drug. If you don't feel any different, it's doing its job." The drugs were invented after I was already living with significant disability, but as the doctor who first precribed Avonex said, "Things could always get worse."

Tysabri is slightly different. The glossy packet of information my doctor gave me does show in colorful graphs, how it is longer before those who take it will use a wheelchair. Too late for me. The once a month infusion (administered at an infusion center) had some attraction. The info packet also included information about PML. Progressive multifocal leukoencephalopathy is a rare and usually fatal disease, incidence of which is increased by taking Tysabri. Six patients receiving the drug have contracted PML; four deaths have been linked to Tysabri. My doctor suggested it would be an appropriate medication because my MS is progressing.

Every time I worked the equation in my mind, the fact that "could kill me" was on the Tysabri side made the medication switch seem like a bad idea. It seemed that the doctor was suggesting that it would be better for me to risk death than to become more disabled. That made me remember the disability activist group called Not Dead Yet, formed to combat the spread of legalized assisted suicide.

When I think about suicide (and that is fairly frequent), I realize that I don't really want to kill myself. I want to kill a difficult situation. I want to kill the limitations that my care places on my family. I want to kill the lack of care I get from the medical system. A recent editorial in the New York Times pointed out that chronically ill Americans suffer far worse care than their counterparts in seven other industrial nations. For me, the antidote to suicidal thoughts is often to think, "If [name some level of care I am not receiving] were in place, would I still want to die?" Then I realize how much I want to live.

For instance, if I had someone who could help me to the bathroom in the middle of the day and someone who could take over my care so that Ralph and Alexis could travel, I would feel so much less a burden on them that I would stop wondering if there is a bridge over which I could drive my wheelchair.

Samuel Johnson wrote, "when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully." My neurologist's suggestion that I risk death by taking a new medication has invited me to a new appreciation of life.

1 comment:

Lauren said...

Hi Kate,

I have had MS for 32 plus years, and I am looking forward to my 28th Tysabri infusion next week. I am also in a wheelchair, but my disease progression has been drastically reduced with Tysabri therapy, and since restarting the medication in October 2006, I have not had one single relapse and according to my MRIs taken in June 2008, I have no new lesions.

Tysabri has kept my MS stable, that makes me happy :)

I wanted to let you and your readers know that you incorrectly stated "four deaths have been linked to Tysabri"... no dearheart, there have been only two deaths linked to PML & Tysabri use, and those two unfortunate deaths were in patients participating in the Tysabri trials..., which by the way neither one of them had MS.(Actually, one of those patients was a Crohn's patient), and the FDA ruled that the primary cause of death was due to the use of Remicade, not due to Tysabri.

The world renowned New England Journal of Medicine's authors have indicated that PML is caused by a diminished immunosurveillance (or an extremely low immune system), not to Tysabri. As a matter of fact, most MS patients have a very high immune system, which is why we keep having relapses.

If you were/are not on a very strong MS medication such as Novantrone, CellCept, Imuran (Azathioprine), Methotrexate, etc., (all of which can have lasting effects in the body even though discontinued for months/years) your odds of developing PML while on Tysabri as a monotherapy are less than approximately 0.1%, or 1 in 35,500. All six patients that developed PML were previously on one of those very strong immune suppressant medications, and this can also include regular/pulse steroid use.

Currently, there are over 35,500 patients on Tysabri therapy.

Tysabri's efficacy in preventing further relapses, slowing the disease process down is 67%, whereas the ABCR's efficacies are only 29% to 34% [respectively]. Further, Tysabri is the only marketed MS treatment to show both significant slowing in disability progression AND sustained improvement in physical disability.

In any event Kate, I wish you nothing but the very best no matter which therapy you choose to fight your MS, and I hope and pray you and your loved ones have a wonderful Thanksgiving!

All my very best, Lauren :)