Remicade: Cancer odds # & a question about fatigue.

I am sorry Zach, I don't have too much experience with Remicade but the statistics you provided are interesting for people considering treatment with Remicade. I don't think I would let those #s stop me from giving it a shot although it seems like more of a band-aid solution than anything else.

I am always tired. I doubt Remicade would help with my fatigue because I suffered from fatigue long before I had UC. It's really frustrating being so tired all the time. I wish I could give you some facts but unfortunately I don't have any. Maybe if you start a topic specifically asking about Remicade & Fatigue you will get more response. I know we have quite a few members being treated with Remicade.

I wonder if any treatments help with fatigue. I can tell you all the meds I am on only make it worse!

Zach,

I can't answer your questions about remicade since Im new at this and have never taken it. I will say, though, that I feel pretty fatigued very often. And im not really sure why- but I recently started taking Lialda and keeping constant bed/wake times, (which will do you wonders) and I feel great. (Though that really doesnt help a lot.)

My advice to you- start going on those snowboarding trips and asking girls on dates. Make a joke about having awful stomach problems or that you ate something bad the night before, I don't even know. Try as hard as you can to not let it get in the way of your life (though im sure you already are). You're friends aren't going to judge you completely based off of your bowel habits. The great thing about car rides is that there are rest stops EVERYWHERE. Just bring a TON of water or something and make them keep stopping because you have to pee. (Ive done that... I mean, hey, dehydration is a common problem amongst travelers!)

If your UC is really getting in the way of your life that much, and you are considering NOT taking the remicade because of your cancer chances, then I'd say you should make the decision to do whatever you can to make your life better. No regrets. I hate to say that all of our cancer risks are already pretty dang high since we have UC, but i think itd be better to live your life happily than reserved and in fear. If the big C is going to bite me one day, which it very well may, I just want to look back and know i lived it up when i could.

Go snowboarding. Fall in love. People like you for you, so keep hanging out with your friends (and make new ones, too).

Do them today, not tomorrow. Now's your chance!

:)

MNL

Thanks for this post, it feels good to hear someone else that is my age talk about all the things we go through with this disease.
Needing to know where the bathroom always is and not being able to just do normal activities. I would love to go on a road trip and not be worried about the bathroom the whole time, or go for a hike and not have to make sure I have TP in my pack... just in case. Or have a glass of wine and not feel like it will be the end of the world or couch surf while I'm traveling, can you imagine? Staying at strangers houses and their bathroom being right next to their bedroom... I'm just dreaming now. How about traveling out of the country without being scared of a flare-up and having all your meds?

Good luck to you, I am going to try immuran for the first time and I'm so scared of all the side effects and cancer but I'm also so tired of not living life to the fullest. Worth the risk? I guess we will see :)

i believe yhe risk of lymphoma in the general population is 2/10000. Azathioprine increases it to 4/1oooo and remi with aza to 6/10000. i dont think they know about remi on it's own. There have only been a few cases of the particular cancer you mentiond which is fatal. I got this info from a recent ccfa talk someone posted on the cd forum. to put thisin perspective 1/250 will die in a car accident in the us.

Zach, I was given the same statistics about Remicade, except that all of the cancer cases happened in adolescent males (so I'm assuming under age 21) and all of those cases were on aza/imuran and Remicade. My Remicade nurse told me that she has seen one case of lymphoma, but that person had had lymphoma pre-IBD in childhood. 

I've had some reactions to the infusion (chest pain at the end), but my biggest fear is that Remicade will stop working...not the cancer risk.

If you're flaring, it's not surprising that you're fatigued. Unfortunately, I'm still fatigued even after being on Remicade 2.5 years and having normal blood work. My PCP just diagnosed me as having chronic fatigue syndrome since they couldn't find anything else wrong. *sigh* 

I was diagnosed anemic upon entry and discharge from the hospital. It was so bad this time I would nearly pass out from standing up. I had no energy to find a job and felt like sleeping on the job. I have taken iron every day for 2.5 months since then and I have more energy, I can get out of bed but still came up slightly anemic on recent blood test.

Make sure your not anemic.

@LONIE: what was your bad reaction to remicade? It has been approved for UC? I recently heard it was only useful in crohns. Thanks for the positive post, I am considering taking remicade to imuran and like all the feedback on the options out there.

I have been on remicade for a little over a year. I LOVE it! It is so much more enjoyable verses steroids. I was on Predisome when I was first diagnosed with crohns and I hated it! I get remicade every 6 weeks for now but I feel great and to answer your question yes you have more energy on remicade and dont nessicarly have to have as much sleep. but that might just be me, being a teenager.

^InSoFla....So sorry you are going through all this. Question...you were on Aza and Remi at the same time?

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!

I have not had a chance to read all of the responses, but I am on Remicade, and I couldn't be happier. I felt the same on Humira, which carries the same basic risk. I would hardly call the treatment a band aid since I have been given years back of my life and I am in a better place than I would be with having surgery, from all of the reports I have read.

I live a normal life on TNF blockers. There is always the fear of the unknown with drugs like this, but there is risk to everything and I feel the risk for me is worth it. I would have to seriously consider doing the combo of remi and 6mp or one of the others though.

As far as fatigue goes, I don't have as much energy as I did overall before my UC diagnosis, BUT I also have 2 kids that I didn't have then either. I was diagnosed after my second child was born-she was a challenging baby and came only 16 months after my first, so exhaustion has been a way of life for me for a long time. Hard to know if it is the UC or raising kids. And now that i am pregnant again, I could sleep at any moment. Also, I gained SO MUCH being on steroids that I know that has also slowed me down. But as compared to flaring versus remission on TNF blockers, I go from barely functional to going on 5-6 hours of sleep a night (not by choice, lol) and living a normal life. So Remicade and Humira before it really did give me my life back. 100% worth it for me, and I am hoping it works for me for a long time to come.

my understanding the being on 6mp or imuran w/remicade increases the risk of cancer.

The first two infusions I was slightly tired, but my third infusion I was very tired I went to bed a few hours earlier than I normally do, two nights in a row. I also felt very tired for a week. It is now 10 days after the infusion and I feel a lot less tired and have been walking and doing some cardio.