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Her Remicade (and now Humira) Experience – Chapter Five
Hola Ed Dewke. So ... After 18 months (more or less — actually less ... more like 12-13 months), Remicade stopped working. My Crohn's was being mean. I did antibiotics and doubled the Remicade twice but that didn't help too much ... Crohn's still acting up, ongoing for six months. My psoriasis was making guest appearances all over my body. So was joint pain. At last, the docs gave up hope on Remicade and I started Humira. I took the four shots in the belly ... and ... exactly one week later, I ended up in the hospital having an emergency appendectomy.
One of the Humira shots was right near the appendix. However, the doctors believe this is “unrelated.” I think that's a bit of hooey, but it's hard to say. HAS THIS HAPPENED TO ANYONE ELSE OUT THERE?
I recall my first dose of Remicade. Got it on a Friday. Woke up on Sunday and all the gums in my mouth were swollen. I was told that was “unrelated.” Then I started having lung problems after each dose. I was told that was “unrelated” by the doctors administering the Remicade, but not by the doctors treating the side effects. Then I started getting weird pains in my thighs. I was told those were “unrelated.” I never had any of these problems before Remicade and I don't have them now that I'm off it. I guess the point is inject at your own risk because no one really knows what the hell this stuff can do to you. Fear not anyone reading this: Remicade also cleared up my P like nothing I had ever seen.
Anyway, from what I understand, this hasn’t been a normal lapropscopic recovery, as two weeks after surgery, I'm still buckling over in pain. However, “that can be normal,” says the surgeon. “If you still have pain a month from now, though, that’s not normal.” Lucky me. I'll let you know.
I'm now a week late with my second dose of Humira. I'll be taking two shots tonight, but in the leg, thank you very much. Consider this a test. If my knee needs to be amputated in a week, you can bet the Humira had something to do with it. [Though she’ll be told it’s “unrelated.” –Ed] On the bright side, the P has disappeared from everywhere but behind one ear. It's annoying but I can live with it. I'm just glad Remicade gave me back my finger and toe nails ... and I did have a few tolerable months stomach-wise.
On another bright note: Percocet for pain has slowed the Crohn’s down as a side effect. I don't know why they just don't put me on Percocet and call it a day. Now I'm running out of Percocet and running to the bathroom again. That really sucks.
-Itchy Flakey Cranky Crappy and full of surgical scars in NY
Ed’s Response: I don’t know what to say, Itchy. That’s pretty unusual for me. My last words to you in Chapter Four included my duh-h-h observation that it was too bad you couldn’t fire your immune system. You know that misbehaving system had something to do with your appendix going haywire. For what it’s worth, my appendix blew up when I was at my worst with P. It was before I started systemics and I was just spinning my wheels with the topicals. I was on a long-term job in Washington, D.C., staying with friends, and had dinner at a private club with another friend. I woke up at 2:00 the next morning with terrible abdominal pain and cramping. I started what became several hours of vomiting (most of which became dry heaves). The next morning, the head of house where I was staying found me bathed in perspiration and in the fetal position in his guest bed. I thought I had food poisoning.... To make a long story short, I carried the detritus of my blown-to-smithereens appendix around in my gut for 8 days. By the time I got to a hospital, back in Kentucky, they could not say what was wrong with me without “going in.” Later I learned they removed close to a gallon of pus and could not find any of my appendix. They kept me in the hospital for nearly two weeks. Did my appendix erupting have anything to do with my P? Who knows? The doctors couldn’t or wouldn’t say. Amazing things happen when one’s immune system jumps track.
Are you going to try any more Humira? Let us know how you’re doing with the post-appendectomy issues. -Ed