The stats my GI gave me were the same as what Killcolitis posted. I actually wasn't that fearful of the Remicade-related cancer risk. I just didn't like the idea of weakening my body's immune system. I also didn't like some of the other risks mentioned on the FDA website such as drug-induced lupus or joint pain. I am an avid hiker, rock climber and snowboarder. I also work as a park naturalist for a living (lead hikes and nature programs). Anything with a risk of joint pain is a very frightening prospect to me. I can't imagine my life without these activities, which I have a huge passion for.
I was in the hospital last fall with a very severe flare. I got to the point where I was declining so rapidly that I was given the Remicade or surgery option. I researched Remicade on the internet over three days from my hospital bed. I actually preferred the surgery option after researching (for the reasons I mentioned above). However, I was so ill and weak that the doctors didn't think I was strong enough for an operation to go well. They highly recommended at least trying the Remicade. So, I decided to give the Remicade a go. If I didn't show improvement on it in about
a week, I would go in for emergency surgery anyway. Fortunately, I improved rapidly on the Remicade and was able to leave the hospital in 5 days. The plan was to do 2 more infusions and then get a surgery consult to further explore that option when I was in better health. Unfortunately, as soon as I got home, I started to develop a delayed reaction of joint pain from the Remicade. It was the most excruciating thing I have ever felt-- it was like my bones were being broken in two. It was worse at night and would start around midnight and last until 8 a.m. The rest of the day I would experience mild-moderate aches. The pain jumped around to different joints on different nights... knees, toes, ankles, wrists, elbows, fingers, hips, lower back, and I would cry out in pain for hours. My husband and I would say that every night the boogie man was coming to get me. Pain medications did nothing to resolve it, and I couldn't even walk during in the worst episodes. It was ironic that the side effect of Remicade that I was most afraid of was the joint pain, and here I was experiencing that to the worst degree imaginable. I was so afraid that I had done something permanent to my body and that this would be my new normal. My park job and ability to do the things I love seemed in grave jeopardy. I cancelled all future infusions and was tested for drug-induced lupus, but the tests came back negative. Fortunately, after 6-8 weeks the pain slowly went away as the drug left my system. I had a surgery consult, and as of November, am a very happy permanent ileostomate (decided I didn't want to go the j-pouch route). No more side effects from strange medications. In fact, no more medications at all. I am pain and UC free and am living life to the fullest. I even went snowboarding at the end of the season and am backpacking and hiking again.
I am not saying to avoid Remicade. Sooo many people have great success with it with absolutely no problems. My friend takes it for arthritis, has no side effects and is very pleased with it. Just realize that the risks are real and do happen to some people. Overall, I am glad I gave Remicade a shot, as I would have always wondered about
it otherwise. However, I am also glad that when I tried it, I had researched the risks, and was also
open to surgery as an option. This prevented me from staying on the Remicade once I developed severe pain from it. I wonder if I had kept putting it in my system, if those side effects would have become more permanent. I shudder to think of that possibility now. I knew that stopping the Remicade was fine, because I had come to peace with knowing that surgery was a good option for me too. I read about
a lot of people who stay on Remicade even though they are having bad side effects from it just because they are too afraid to lose their colons. After seeing the lifestyle I love almost zapped away by severe UC and then by extremely painful medication side effects, I will forever be grateful that I was given another chance through surgery. I will never take life for granted again. For me, living with a stoma has been a blessing. You can check out my post-surgery adventures (including a video on snowboarding) on my blog, which is posted in my profile.
So my best advice- research your options thoroughly, approach all things with a clear head and not fear, listen to your body and do not ignore any alarming side effects that pop up if you do try various drug treatments. Choose the options you are comfortable with and that give you the best chance at the quality of life YOU long for, and try not to put your life on hold for UC. Do what it takes to get your life back!
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010
Post Edited (Blueheron) : 6/18/2011 12:49:19 PM (GMT-6)