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What's wrong with Remicade?

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Crohn's Disease
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Posted 11/10/2010 1:59 AM (GMT 0)
Hi All,

I have to say I love Remicade!!  i have been in a constant flare for YEARS, till 3 months ago.  10+ BM's perday, and at least one 'accident' per day.  Can't tell you how many times I've had to leave work.... shakehead

Anhoo, for some reasons all my doctors wanted to wait to do remicade, like it was something bad to try, only if all else fails.  And I am in forums sometimes where people are like  - no, anything but remicade!!.  But I must say I LOVE IT so far.  I was able to get married last month, and I didnt go running for a toilet even once!! 

So I guess I have to ask - whats the downside?  Why did the doctors wait so long to try it?  Why do you think people avoid it?    Guess I just want to know what the downside is and why doctors dont just put prople right on Remicade right away. 

Thanks!!

 

Posted 11/10/2010 2:14 AM (GMT 0)
My personal experience is it was my last option. :( I am still refusing surgery as long as I can. I think people avoid mostly because of its reputation to be hard on the body. The "scary" side effects of liver damage is the worst I have heard. They dont put people on Remicade right away because it is so expensive and you have to qualify for it. You have to pretty much tried everything else :( I am lucky. I live in Canada and because I have went through so many drugs that havent worked I passed the paper work and they approved me for it. Its 3000 every 6 weeks. So glad that doesnt come out of my pocket. :) I am not happy to be on it, but as long as I get a liver function test done every 3 months to make sure my liver is fine, Im ok.

I am currently looking into gettingLDN. I really hope my doctor will approve. He is very skeptical. But he would rather treat me with something than have me not come back at all. He suggests surgery but like I said I decline, because it would possibly mean a bag for life :( Not ready for that at the moment. I am only 24.

Anyways good luck, Hope you find the information your looking for :)
Nessa
Posted 11/10/2010 2:14 AM (GMT 0)
Mostly because it has serious risks and side effects.  Humira, Remicade are considered the 'big guns' when it comes to treating Crohn's.  For a lot of people it's a last resort,  everything else has failed them...and there isn't much more to try until more treatments are discovered.  It also has a reputation to stop working after a period of time.

I have to say too that I did try Remicade and I almost died from an allergic reaction.  It doesn't work for everyone.

Post Edited (MAG102886) : 11/9/2010 7:19:48 PM (GMT-7)

Posted 11/10/2010 2:19 AM (GMT 0)
Here are my thoughts..... I think Remicade is wonderful, but that is because I was like you, it worked wonders and I never had any side effects or problems. I think some people think the pamphlet with the warnings and how it alters your immune system ect scare some people. Plus some people do have reactions or problems with it. I do think it is a medication you don't take lightly and should try other things first but when your disease is out of control I think it is a great option.

I was on it from 1999 until 2007. The first few years I was on it intermittently when it was still very new. Then in 2002 I was on it for 5 years straight every 10 weeks. That 5 years kept me in complete remission totally symptom free for almost 8 years, the effects lasted for me awhile after I stopped it.

I am with you, I loved it! I went from being in the hospital for a week each time admitted and going all the time, to no symptoms, having energy and able to eat all the veggies, fruits, and nuts I wanted.

I guess we still don't know if there are any long term side effects, but it has been exactly 11 years since my first dose and I have no side effects or problems from being on it. With that said, I hate Humira and I am still recovering from problems I got while on Humira even though I have been off it for 6 months. Everyone's body is different, if Remicade works for you and gives you your life back that is awesome and I think worth it!
Posted 11/10/2010 3:51 AM (GMT 0)
I have cd in small bowel and throat, rem has helped my throat I would say 75% not that much with my small bowel. the only side eff I have is chest congestion, at first few infusions I got bronchitis ea. time and I would have to take antibiotics, now i guess I've gotten use to it so I just have a cough, but I get alot of relief in my throat area, that nothing else would budge. the cough is a bummer, every time i eat i have to hack up this horrible flem, it sounds like a smokers cough, except i don't smoke.I so self conscience over my cd and bathroom issues that now I'm really self conscience of this horrible cough. I have to spit that crap up, it's just embarrassing.

Posted 11/10/2010 4:46 AM (GMT 0)
As mentioned, Remicade does suppress the immune system, making you more likely to get common illnesses. Additionally, there's been research into Remicade and cancer, whether or not Remicade causes the cancer, or if the cancer is contracted because it is a TNF blocker.
Posted 11/10/2010 5:01 PM (GMT 0)
Hi there, I was on remicade for 8 yrs and liked that it slowed my bowels down and helped with the constant pain in my gut.
Unfortunately this does contain a mouse protein, which Humira does not, therefore some of the other side effects of remicade can evolve over a peroid of time. When remicade failed this summer & 3 major surgeries at once, i just found out why i was not getting better with my recovery. My hands and feet were constantly swelling, the more i tried to do to get back my strength the more pain/swelling i would get. By the time i was almost crippled the doctor's finally found the blood work coming back showing Lupus. YES drug induced Lupus! I am happy for the time remicade helped my crohns but i think oh great another disease i did not ask for ;) It may go away, it may not. So i think i am saying yup these are strong drugs and anything is possible at any time you are on them. You just have to be aware and listen to your body when something as small as a dull headache appears, when using them. Oh and Cronicallyill..I feel for you...2 kids and sick is very hard, been there. I missed so much while they were growing up. The "bag" well i put it off till i now at 44yrs , ran out of options!
Good luck to all..this is one bugger of a disease :)
Posted 11/10/2010 5:10 PM (GMT 0)
Drug induced lupus.
Posted 11/22/2010 7:15 PM (GMT 0)
I was on remicade for almost 2 years and now have drug induced lupus from it. Some people just react different to it, while others have issues with it. I have nerve severe nerve damage in one of my arms and beginning in the other, which all go back to the lupus. I also have had to had fluid removed from around my heart twice and have had fluid constantly around lungs, and all this within the last month. Just watch how you feel and if you start having problems talk to your dr. In my case I did and he assured me it wasn't because of remicade.
Posted 11/22/2010 10:46 PM (GMT 0)
Cost - up to several thousand dollars a month

Powerful drug that suppresses the immune system puts you at risk for severe infections

Long term (20+ years) effects on immune system are unknown

Development of side effects like drug-induced Lupus already mentioned, antibody development that leads to loss of effectiveness, infusion side effects including anaphylaxis

Don't want to use it on a patient who doesn't need it and it's always an educated guess which patient to give it too
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