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Hey guy's I have a few questions for anyone who's taken remicade infusions. I was scoped a few months ago and told my pouch was inflamed and had what looked to be draining fistula openings near the pouch suture line. Biopsies came back negative for crohn's. I then had a ct scan three weeks ago that showed that my jpouch and part of my right bowel was inflamed and a bit thickened. The thickening of the bowel again lead them to think that maybe my UC is actually crohn's. I've been on 40mg of prednisone for 2 weeks now, along with a 14 day run of cirpo & flagyl that'll be over on saturday. It has really turned things around quickly, going from the bathroom 12+ times a day down to 3. No pain at all from my pouch, and I can empty it when full with no problems.

Yesterday I went down for a scope of my stomach from my GI, and it went well. He said my stomach looked good, and then he went into the top part of my bowel and said it also didn't look bad, but had a couple spots with slight inflammation, which he said again could be mild crohn's. He's talking about throwing me on Remicade infusions in like 2 weeks, which I thought was a little soon to start such a drug, especially since I was still taking the prednisione. I kinda want to see what my body does when I taper off the steroid to see if my pouch stays happy, then I wouldn't even need the remicade. He looked like he got what I was saying, then said we'll see how I'm doing the end of july and see if remicade would be a good option. I was happy with that choice.

Just wondering what everyone here thinks of remicade, is it worth it to try? Does it trash your body at all? I just want some opinions from people who have used it, to get a better idea of what I might be dealing with down the road a bit. Thanks for the input!
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Ugh that is a tough call. I was on Remicade as my last resort before having surgery. It didn't work for me at all (now I am glad it didn't work). Its such a powerful drug. I was so hesitant to go on it in the first place but I was at the end of my rope at that time. My mom is on it to treat her RA. I HATE that she is on it but its the only thing that has helped her. Without it she would be crippled. Ever since she has been on it though her health had gone down hill. She was diagnosed with breast cancer last year and beat it thank God but it just really makes me wonder if it was the Remicade. (we have no family history of breast cancer). I guess the point of me rambling is I just don't trust that drug. If there is anything you can do to avoid it, I would.
Yeah it sounds like a harsh treatment, and I'm also wary to try it so quickly, especially with how well I'm doing now. He wanted to use it to "maintain" the inflammation/possible crohn's with the remicade, before I was totally off the prednisone. I rather just wait and see what happens, then jump on the remicade train before I should.

He also mentioned the remicade would pretty much be my "last resort" before they talked about me going back to an ileostomy. I thought that was kinda extreme, since I've had my jpouch for over 6 years, I've only had one fistula years ago that wasn't deep and was cut open from the sphincter muscle, healed great and haven't had any fistula issues since. Also my pouch works great, minus the pouchitis/inflammation I've been experiencing since last year. I thought it was a little extreme talking about going back to a permanent ileo if the remicade treatment didn't work, does anyone else agree?
I tried Remicade pre-surgery and I found it an extremely powerful drug.

In fact I took a reaction to it during the second infusion, an experience I will never forget.

You have a tough choice between an Ileo or keeping your pouch if you don't take the infusions.

I guess if it helps and you can take it you sure have to consider continuing.

If everything has sorted itself out and you're doing really well I also don't understand the use of Remicade. If you're reducing/eliminating both drugs basically at the same time and symptoms return, I wonder if you'll be able to figure out which drug was working for you. For instance, if you have chronic pouchitis you might be able to get along by rotating antibiotics like Rebe and DBJHusky do. I don't believe either of them takes prednisone on top of the antibiotics.

I have a j-pouch friend who is also on continual antibiotics. He adjusts his dosage to the lowest amount that will keep him in remission. Nothing keeps him down - he and his wife travel all over the world to the remotest spots you can imagine and he's doing fine.

I think that Jan has mentioned that we all have some sort of slight inflamation going on and most are totally unaware of it.

Like Marianne, I have mixed feelings about Remicade. I know that it has helped many people including my friend who has rheumatoid arthritis. But she now has lung cancer. I have heard of others with lung cancer after taking Remicade. And I've heard that there have been people who've then gone off Remicade and the lung cancer has gone into complete remission. My friend who decided not to do chemo or radiation also felt that it could have been the Remicade which 'allowed' the lung cancer a foothold. Her life expectancy was months - maybe 1/2 year. She went off the Remicade and immediately started doing much better. It's been two years since her initial diagnosis. Her oncologist told her she was his healthiest cancer patient. Unfortunately, her rheumatoid arthritis became unbearable so she decided to go back of Remicade. I am not trying to scare you or anyone, I just want you to be aware of this. And of course, almost anything you take can cause problems so it's not Remicade-centric.

I'm glad you're doing so well. I hope it continues.

kathy Big Grin
Before we go off the deep end worrying about Remicade and cancer risk, we need to look at the facts, not just perceptions. Recent long term studies have shown that there is no increased risk of solid cancer rates (like colon, lung, or breast cancer) in those who take biologics, such as Remicade. Just because someone gets cancer while taking these drugs, it does not mean there is a cause and effect, paticularly since most of these cancers take many years to develop. Here is a link to an article discussing it:

That does not mean the biologics are not without risk. Mainly, it is bone marrow supression and liver damage. That is the reason for frequent monitoring blood tests. Typically, these issues are reversable when you discontinue the drug.

My main issue with Remicade is the higher risk for allergic reactions, mostly because of the mouse protein it is based on. I was happy when my rheumatologist suggested Humira without even trying Remicade. Humira is human protein based, and also does not need an office visit for IV infusion, since it is given by injection. I prefer self administration, as it is less disruptive to my life. I have been on biologics for over 7 years. First Enbrel, then Humira, and now Simponi. During that time, I have only had improved arthritis symptoms, and my gastroenterologist says my pouch has never looked better. I have my labs checked every three months and have only improved over the years (liver inflammation that was present at the beginning of treatment has only improved).

Bottom line, biologics are great to avoid long term steroids. But, obviously, you should not take them if they are not necessary. Just do your homework and make an informed decision.

Jan Smiler
Thank you all for your opinions!

Hey Jan, thanks for sharing info on other biologics other than Remicade. From what everyone has said I think all I can do now is wait until the end of July, and hopefully my pouchitis and any moderate inflammation that was there stays away when I taper of prednisone. By the end of July I'll only be on 5mg of it, so if the symptons were to come back they would before then. Hopefully the fact that I stopped smoking, stopped eating processed foods, drinking 10 glasses of water a day compared to the 1-2 I did before, not drinking sugar drinks or pop, and not eating candy or junk food, taking omega 3/ aloe vera juice, multi-v, and I'm starting a probiotic that came today for the first time in my life will all keep this flare up at bay so biologics aren't even required.

Worse comes to worse and a biologic is the next step, I'm definitely gunna ask for something like Enbrel or Humira to try first. Cause if those less extreme human protein ones can keep me in remission, then that'd be alot better to know then starting out on the most extreme one.
Enbrel won't work, as it is just for arthritis. Didn't do too much for my arthritis either, since it was IBD related. The only reason I was on it was because I was waiting for Humira approval for spondylitis.

Right now, the most important thing you are doing is quitting smoking, paticularly if there is suspicion of Crohn's, since smoking exacerbates Crohn's disease. Plus, as we all know smoking absolutely is linked to increased cancer risk, not to mention heart and lung disease, and many others! So, bravo to you !! I know it is not easy, but a great thing you are doing.

Jan Smiler
The funny thing is, quitting smoking was one of the easiest decisions I ever made. I was never a heavy smoker, I probably smoked 3-6 cigarettes a day, for about 5 years. My gf still smokes, but we now have a smoke free house so she goes outside to smoke. I didn't even get any cravings the last 2 weeks, it's great. I'm still coughing up a bit of crap out of my lungs each morning and when I go for a run, which is normal for the first 6 weeks after quitting smoking apparently. It's your lungs finally being able to fully heal and cough up all the really sticky smoker's phlegm crap. I'm really feeling better than I have since before I got UC in '04.

Hey Jan, so would you say talking to my GI about humira before remicade infusions sound like a good idea if my inflammation returns after the course of prednisone? I rather try it before dealing with remicade.

Also my probiotic came in today, I have a question for people who actively use probiotics and have had to do a course of cipro&flagyl for pouchitis. My 14 day course of cipro&flagyl comes to an end this saturday, so I have 3-4 days left on them. What would be a good time to start trying my probiotic? I want to start it a little before my antibiotics run out, so it can be in my system before any bad bacteria decide to re-populate. The daily dose says 2 pills a day, one with breakfast and dinner. If I started taking 1 a day 6 hours in between my antibiotics, would that be good or would it effect the strength of the antibiotics? Any personal experiences would be much appreciated.
If it were me, yes, I'd want to discuss the option of Humira over Remicade. But, some docs have their reasons for wanting to do Remicade first, and sometimes they don't want to budge on it. For the insurers, it is pretty much all the same, as the cost for the drug is about the same. But, Remicade also incurs the expense of administration (office visit + IV infusion cost- some of that is passed on to you as copays). I suppose for the docs, that is a plus, because it makes them more money, but I doubt that it is a factor in most cases (at least I'd hope not). But, mostly, those who do prefer to start with it, have the reason of it being the first biologic, so there is more data. There are some newer biologics being used for Crohn's, but they are not necessarily better, and have their drawbacks, so they are mostly second and third line after Remicade and Humira. There are other things in the pipeline. Just nice to know Remicade and Humira is not the end of the line.

Simponi (which I am on now for over a year) is now in phase 3 studies for UC. So that may be approved for use in IBD soon. As I mentioned, my pouch has never looked as good as it does since being on Simponi.

Your plan for your probiotics seem sound. They should not interfere with the antibiotics. It is the other way around, that the antibiotics interfere with the probiotics. Personally, I just begin probiotics as soon as the antibiotics are finished. But, that is just my choice, mostly so I don't have to keep track of so many pills, not because I think it is superior. There is not a clear consensus on the matter as far as I know.

Good luck and fingers crossed for you.

Jan Smiler

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