So, if you had a 1% chance of dying from taking an aspirin, would you do it?
1% sounds like a low number, right? Then think of all the aspirin you've taken in your life. I'll bet you've taken 100 aspirin, or advil, or tylenol this year. Suddenly, that 1% doesn't seem so low.
I've been on methotrexate since 1995 without a single adverse event severe enough to send me to the hospital.
When I started methotrexate, the mortality rate I was given was 1%. My guess is that it's considered lower now. There is a significant mortality rate associated with simply having RA anyway. Ten years off my life was the last figure I heard.
So, from what I can gather, Remicade's mortality rate is around 2% to 2.8%. (Disclaimer: This was taken from a blog somewhere that referred to a Stockholm study that I can't find. This might be a wildly inaccurate number. ) Most of the cases I have turned up have been one of four kinds:
1) elderly individuals with histories of congestive heart failure or heart problems dying very suddenly a day or so after treatment
2) elderly individuals with pre-existing lung issues that can be caused by RA, methotrexate, or remicade rapidly declining into death after remicade treatment
3) people with latent TB whose TB becomes active
4) fungal infections, some fatal, striking people mostly in areas of the country where these infections are endemic (but considering that RA patients are now healthy enough to travel more, this could be an issue for me)
I've also found stories of T cell lymphoma developing in people with remicade, although, from what I can gather, these seem to be mostly patients with Crohn's Disease who received another drug called azathioprine.
I think that my secondary risks are low. I am not elderly, although I feel it some days; I do not have latent TB and because I work with children, I am tested every year and so are all of my co-workers. I do not have any known lung involvement. I don't live in the area where the fungal infections happen (although I keep getting random athlete's foot for the first time in years. Gross. I'll tell my doctor. ) I have never had azathioprine.
However, in the past few weeks, I've been wiping noses of sick kids at the school I work at. At respite camp, I had to help the nurse apply a topical cream to a kid's rash. (And we know rashes usually don't show up in good places. That's all I'm saying.)
I'm super careful about my gloves now. I wash my hands and use so much sanitizer that my hands are about to fall off. I earn dirty looks when I stop doing my job to run over and sanitize my hand for the billionth time. But I'm scared as hell.
This is where science and statistics confuse me. Do I, 31 years old, no history of heart trouble, no real lung involvement other than chronic bronchitis every few winters, have a 2 to 2.8% of dying from this medicine? Or is my actual risk much lower? Or, as my husband says, is it a 50-50 all the way -- "You either die or you don't."
Still, I haven't had a bad hand day in a long time. The fatigue, as always, is a killer, but the joint pain is really down again.
Is this worth my life?
What kind of life is it when the pain is bad? I remember just a few months ago, late April, lying in bed at respite camp, listening to the kids breathe, and being in so much pain and so desperate that I couldn't sleep. There's nothing more miserable than pain. It's the ultimate subjective experience -- you can't get into someone's pain. It sets you apart, makes you your own island.
When I'm at work at the conductive education center and I see that look on a kid's face, and I'm bending stiff muscles into a certain position, I think about how I would kill anyone trying to do that to me if my knees were sore. I can feel the cartilage creaking under my palms sometimes. And I'm in awe at the strength it takes at 3 years old, at 4, or 5 or 6, to simply keep working through whatever hurts.
Because the reward, the being expected and in turn, being able to be an active participant in your own life, is worth it. They don't know this yet... although I think they sense it.
I think that's my conclusion for the next IV of Remicade that goes into my arm on Monday. The reward is worth it.
But it still scares the living shit out of me.