Potentially starting Remicade -- anybody with "mild" Crohn's taking it?

[JDTM]

Howdy everyone,

Well, I had a pretty good run of relatively symptom-free life, but it looks like symptoms are flaring up (confirmed by endoscopy and colonoscopy), and my GI is talking about Remicade. I did OK for quite a bit on LDN and mesalamine, but I'm certainly open to getting this more under control versus waiting for things to get worse. That said, does anyone here have "mild" Crohn's that's currently on Remicade? And if so, what are your experiences with it?

Currently on my first ever course of prednisone for IBD, which may be helping some, but it isn't quite the silver bullet I'd hoped for. I'm almost a week into it.

Thanks in advance!

 

[awoenker12]

I am on Remicade and I consider my Crohn's to be mild. Earlier this year, I was flaring for most of the winter and spring, and part of summer. However, this is only my second flare up since my original diagnosis back in 2012. My symptoms when I flare are 2 to 3 loose bowel movements per day with some mild abdominal cramps. I was originally on pentasa, but I stopped taking it since I thought I didn't need it. Well, that was a big mistake, so I tried 6mp and that didn't do anything for me, so then I moved on to Remicade, and that did the trick. Currently, I have no symptoms, so I guess my case is mild.

 

[Crohn2357]

https://www.crohnsforum.com/showthread.php?t=84154

 

[JDTM]

Hi Crohn2357,

I'm assuming you posted this link to point me to the researchgate article on a conference paper that concludes that the risk of cancer is not increased due to taking infliximab, which of course is good news. That said, are you currently on infliximab and do you have mild to moderate IBD?

https://www.crohnsforum.com/showthread.php?t=84154

 

[Crohn2357]

Hi, I am currently on Cimzia and 6mp. It's mild to moderate, but I have long history of severe and treatment-refractory, stubborn Crohn's with fistula development and a resection surgery.

If I were you, I would not even think about it. I think anti-tnfs are essentially non-toxic (compared to immunosuppressants, they aren't directly toxic with a broad toxicity). Very specific mechanism of action. Though, I would choose humira over remicade for the sake of convenience: Humira pen injections are very easy to do, even if giving yourself "normal" (i.e. needle open to view) injections disturb you, the pen injections are different. So you don't have to visit hospitals for your drug to be administered. Aside from the independence aspect, with humira, there is a fewer risk of antibody formation risk compared to remicade, and a decreased risk of allergy to it compared to remicade; both for the same reason: humira is a fully human antibody, while remicade is not.

With uncontrolled Crohn's, waiting is losing. The effects of prolonged gut inflammation are far more devastating for your health than the effects of these drugs. Also, your current seemingly mild Crohn's can escalate to a severe and refractory Crohn's that would make you suffer a lot, and lose time and health while waiting and hoping your medication will work. It's important to catch and treat Crohn's as early as possible.

I remember your helpful comments from my old LDN days, I hope you will get well soon.

 

[JDTM]

This makes total sense, and you're 100% right -- keeping inflammation down is the name of the game! Really appreciate the insight and kind words.

 

[Crohn2357]

In addition to the above, remicade has been on the market since 1998 [1], so there is a relatively good pharmacovigilance data (and its statistical analysis) collected from the experiences of patients with different inflammatory diseases all around the world. Apart from the theoretical aspect, this is another thing to consider as reassuring for the use of anti-tnfs.

[1]: https://www.nytimes.com/1998/08/25/science/first-drug-approved-for-crohn-s-disease.html

 

[JDTM]

Whelp, the plan is to start Remicade, but I'm currently waiting to hear back from my doctor's regarding insurance approval and scheduling. The waiting is truly the hardest part! Come on people, my gut hurts!!