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Don't know much about Remicade. Why do people swear by it?

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Crohn's Disease
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Posted 9/12/2011 4:44 AM (GMT 0)
I met with a girlfriend over the weekend and learned that her husband has Crohn's. She told me that he takes a Remicade booster about once a month and it keeps his crohn's under control. The only thing my GI said was "Oh, that's for when the Crohn's gets serious." She obviously doesn't think I'm a candidate. I've always been able to control my Crohn's with diet (no dairy) and when I cheat once in a while or accidentally have it, I take Rowasa. However, I had a flare in early  July and am still trying to tame this nasty thing! I'm now on Rowasa and Ascacol, taking Prolesic, all the necessary supplements and vitamins, amd probiotics. I've was on a super bland diet all week and am finally improving but still having diarrhea after eating even the blandest stuff. It's very frustrating! Anyway, he told me he drank one to two pots of coffee a day and has no dietary restrictions. Is this all thanks to Remicade? If so, sign me up! My girfriend told me it costs like a grand a month to get this shot, which blows my mind. So you Remi users out there, please inform me of this as my doc was of no help! Thanks!
Posted 9/12/2011 5:41 AM (GMT 0)
They are willing to use it more often now, as it helps milder sufferers achieve remission and stay there for quite awhile. The biologics (Remicade, Humira, Cimzia) are pretty new and expensive(they also have programs to help you pay too), but, in my opinion, well worth it...they have risks, but to me, I think the risks from prednisone are scarier, an I HAVE felt the side effect from prednisone (of which I despise)

It sounds as if your are in a moderate type flare right now, and this might be something that could improve you symptoms fast. Good luck
Posted 9/12/2011 10:01 AM (GMT 0)
hey there. remicade did not work for me at all. my body began to make antibodies almost immidietly so we had to stop and go to Humira which also seems not to work. The Remicade was costing me $17,000.00 for each infusion- holy moly!
Posted 9/12/2011 12:10 PM (GMT 0)
I see Remicade as a miracle drug because I've only had 2 infusions and I'm basically symptom free. I've already exhausted other medications though prior to beginning it. The only downside I see is that it's not a long-term solution, depending on when your body builds up antibodies against it (could take a month...could take 10 years who knows). I just know that prior to Remicade I was going 10-12 times a day and was completely miserable, and since starting that and being on a brief course of Pred I go 2 or 3 times a day max and feel outstanding.
Posted 9/12/2011 12:27 PM (GMT 0)
that's awesome Aces! i wish i could say the same!
Posted 9/12/2011 7:31 PM (GMT 0)
25 minutes into my third dose of Remicade I lost consciousness for 3 minutes. My blood pressure dropped to 74/41 and my heart rate was at 155. After 2 EKG's and a over night stay in the hospital with a holter monitor, all readings normal, the Dr's believe I had a reaction to the medicine. It's unfortunate because I was starting to feel a little bit better. I had an allergic reaction to 6-MP which put me in the hospital with pancreatitis, my inflammatory markers were still high while on Humira, and now this problem with Remicade. Ugggg.....
Posted 9/12/2011 7:44 PM (GMT 0)
i dunno.. if you have mild crohn's i would rather stick to diet than have rat dna in my body since we have no idea what the long term affect is. no thanks!
Posted 9/12/2011 9:26 PM (GMT 0)
kew, remicade can work very well for some people and give them a more normal life again. If you have mild disease, it should be treated with something, but there are other options besides remicade which could work well for you too. If your quality of life isn't where you would like, talk about other medical options with your GI.


Noories—it was originally mouse protein, not rat dna. And it has changed since then to become more humanized.

Besides every time ppl eat meat or animals, they're putting that animal's DNA into their digestive system. Some people think that's gross and has long term side effects. ;-)
Posted 9/12/2011 11:35 PM (GMT 0)
Roni: lol i was just picturing a goat rather than a rat going through my veins and it painted a rather stupid picture in my mind! haha! although, mouse is quite different from domesticated animals (or so i think in my rather naive mind), i would not want to pay $$$$$$ to get 30% of mouse in me. just doesnt feel right :P

tsitodawg: dont get me wrong, im all about emergency medication! i do have crohn's and ibs and i know what i might have to go through in the future, im not invisible. i disagreed about remicade for mild crohns (my opinion). if it was the ability to drink coffee or eat butter and be on remicade versus lighter meds and nutrition and not have the ability to drink coffee or eat butter, i would think that people would opt for the lighter meds. since remicade has its effects and might ultimately no longer work. if it was for an emergency, life or death, i too would do anything, whether its radiation or biological medication. but that wasnt the subject of the post (to my understanding).
Posted 9/12/2011 11:39 PM (GMT 0)
noories- we certainly do know the logn term effects...my cheese consumption has increased dramatically since taking remicade...and i gave our cats away.
Posted 9/13/2011 6:05 AM (GMT 0)
I did 8 or 9 years on Remicade, and it was WONDERFUL! Everyone, -EVERYONE-, reacts differently to medications, so don't let others experiences scare you away from something that may be your wonder drug.

I had no issues with a double dose of Remicade (1000mg every 6 to 8 weeks) for 8 or 9 years. At the very end I did, but in that time, I experienced many, many years of symptom free living. Even now, knowing that I'd have to stop taking it in the end, I'D DO IT ALL OVER AGAIN! I had no issues with the infusions, in fact, I really enjoyed that downtime. I had no side affects until after 9 years on that drug, and that could have been just me, not the drug. It worked very well, and gave me some very much needed remission in a time when my son was very young. Don't let the "possible" side affects scare you off. Don't let a few peoples negative reactions (even mine) stop you from trying something that could greatly improve your life!

As others said, think about what Prednisone does to your body, I was last on that over 10 years ago and am still dealing with the issues from that drug. Danged if it didn't work, but it took a much larger toll on my body than Remicade did. Also, think about the damage that is done by letting Crohn's run unchecked through your system.

Only you can make the decision, talk to your doctor, and don't forget to get a second opinion.
Posted 9/13/2011 5:07 PM (GMT 0)
As others have said, I believe that the biologics are for "moderate to severe" Crohn's or when other medications have not been able to work for you. If they think that safer and less expensive drugs will treat you, then they go to those first.

And, IMO, just like Crohn's patients respond differently to various drugs, we also are unique in our dietary restrictions. When in remission, regardless of the drug that put me in remission, I have virtually no dietary restrictions. Even while in a flare, a lot of things that bother others, like dairy, don't bother me at all.
Posted 9/13/2011 6:28 PM (GMT 0)
If you are only in mild to moderate flare I would say stick to the lowest level medication you can. Keep the big gunds like biologics for when and if things get really bad as the body can develop a resistance to it and if you develop that now if will stop you having it in the future when you really have no other option available. At the moment you have options available, try those and discuss the options with your GI. What about 6mp, Imuran and other similar meds. They are immunosuppresants but not on same level of the biologics.
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