Wednesday, January 30, 2013

Your Odds? MS Treatments and Weighing Risk

Every single day we take life-and-death risks. We just don’t always think about it. So when people on multiple sclerosis websites furiously comment (inevitably in all caps) that I WOULD NEVER PUT THAT POISON CALLED TYSABRI IN MY BODY it gives me pause. When Tysabri launched, the drug posted a “black box” FDA warning of a 1 in 1000 risk of developing PML, a viral disease that is often debilitating and can be fatal. But how risky is that? I mean, if you were in a football stadium that seats 60,000 Tysabri users, an average of 60 of you would get the disease. That sounds scary. Yet those are about the same odds of you drowning (1 in 1073) in your lifetime, according to the National Safety Council. Now I know what All Caps Guy is thinking—I WILL NEVER TAKE A BATH OR SWIM IN A POOL OR GO TO THE BEACH OR WALK NEAR A RIVER OR CROSS A BRIDGE OVER WATER OR PEE STANDING UP IN THE EVENT I LOSE MY BALANCE, HIT MY HEAD ON THE BACK OF THE TOILET, KNOCK MYSELF UNCONSCIOUS AND DROWN FACE-FIRST IN MY OWN URINE. Hey, it could happen. But there far higher odds your life will end in other ways. Crossing the street: 1 in 623. Getting shot: 1 in 300. Falling down: 1 in 184. Accidentally getting poisoned: 1 in 139. Suicide: 1 in 115. And leading the way (other than heart disease, cancer and stroke), dying in a car accident: 1 in 85. That means 706 people in that imaginary stadium ultimately will die behind the wheel.

I’m not promoting or advocating Tysabri or, for that matter, any other treatment. And I don’t mean to trivialize risk—it’s real and not to be taken lightly. (In fact the risk for PML increases the longer you take the drug. After two years the risk doubles, although even then that still means you have a 99.5% chance of not developing the disease.) I’m just trying to put it into perspective. Multiple sclerosis can be a challenging disease and taming it effectively, for better or for worse, often means taking calculated risks. Many current and upcoming MS treatments, not to mention clinical trials, certainly carry a level of danger—some more than others. But that needs to be weighed carefully against the potential upside, which can be significant. Also when it comes to risk, consider how your disease may progress if you don’t take that medication or don’t do that treatment. There’s risk there, too. Of course, heck, tomorrow you could always get hit by a bus DRIVEN BY A GUY WHO TYPES IN ALL CAPS and then you’ll never have to worry about making an informed decision again. But what are the odds?

Originally posted March 10, 2011.

8 comments:

life well Lived said...

I believe the odds for getting PML in any given year go down after 3 years, not up. At least that's what the studies I've read have said.

Still, I am JC+ which means I have the antibodies and could get PML. Still, my odds are somewhere 1 in 250 or 1 in 300. For perspective even being JC+, the odds of getting PML are still lower than the mortality rate from chemo suggested for breast cancer patients after a successful mastectomy (note I believe this is suggested for them as it lowers their long term cancer mortality rate). So for the most treatable cancer, the suggest course takes more risk than I do with tysabri. When I started tysabri, I said give me 5 good years over 30 crappy ones. 5 good years later, I am still willing to make the trade again for the next 5 years.

I know I am lucky I have access to the drug and it has worked for me thus far. I wish everyone with MS had my choice to make.

Dave Bexfield said...

LWL, studies do show the risk of PML going up after year one and then dropping after year three, but even Biogen admits there isn't conclusive data on this just yet (not enough folks 48+ months). Yes, we are lucky that this drug works for a number of us....

Brenda Solis said...

Thank you for your blog. I happened upon it this evening. Funny that you discuss treatments. I am newly dx'd. 12 days to be exact. I have limited symptoms and just told my DH that maybe I should really consider foegoing treatment for now cuz of side effects. But then you make such valid points. Combined w the article I read today in momentum, I have to keep thinking. Thank you.

Dave Bexfield said...

Thanks Brenda. Making a DMD decision can be challenging. Here's a link to posts related to that (including one that has gotten more than a little attention, for better or for worse): http://activemsers.blogspot.com/search/label/Disease%20Modifying%20Drugs

Anonymous said...

interesting. personally i find i'm much more willing to take risks than i was before i got sick.

Dave Bexfield said...

Anon, for me, it was easier to take risks as the disability ramped up. You definitely become more open to riskier options the more desperate you become.

Sabine said...

Thank you Dave for your blog and for your continuous support.

I was on interferon for 2 years. I had a serious relapse in July, I am seeing gray in my right eye. My doctor decided that I have to change my medication and choose between Gilenya and Tysabri. After doing all the pre-tests for both medications, I am allowed to take both and finally decided on Tysabri.

Reading your posts made me feel better as honestly I am worried a bit about the side effects of this particular medication. But as you said, we have to take risks!

Dave Bexfield said...

Sabine, glad to put it into perspective and best wishes on your treatment.