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Remicade and Cdiff?

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Ulcerative Colitis
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Posted Today 4:10 PM (GMT 0)
Hello all,

So, my colitis keeps flaring. I get a months peace, and then BAM, it comes back full force. Right now it's not so much constant D as constant blood. All the same, my gastro says she can see surgery in my close future because of all the damage this disease is doing, unless I do something like remicade.

I am terrified of remicade. Saw her yesterday and she wants to start Monday at the earliest. I trust her and she made me feel really okay with the idea, explaining everything, etc. But this morning I woke up thinking that I often test positive for Cdiff. I've been treated twice and don't feel any more symptoms like I did when I had it, but if I test positive again can Cdiff kill me if I'm on remicade?

Also, I am lucky to have great teeth naturally, but because of this i've neglected the dentist for about three years..cough.. should i tie up any loose ends at the dentist before going on remicade?

Also, can I get any advice about this drug? Is a lifestyle change required once you go on it? Am I more prone to infection or just more vulnerable once I contract one?

Any help would be amazing. I am 25 years old, a female, and I am currently on 4 mezavant pills a day. Was also on salofalk suppositories and mesalamine enemas, but doctor told me I might as well toss those out since they're not helping. I know the next step is prednisone, but the doctor says it's just a bandaid and that though it can buy time, it's got a lot of side effects and does no real healing.

Thank you.

Lena
Posted Today 5:11 PM (GMT 0)
Why are you afraid of remicade? You should weigh the risk against the benefits. 60 percent of uc patients notice improvements in their symptoms on remicade. Side effects are extremely rare. The most scary of which is lymphoma and the odds are 4 in 10,000 (or 0.04%). Remicade infusions take 2-3 hours and are painless other than a brief needle prick when the nurse sets the IV. It can be boring, so bring a book, iPad, or other activity along. Prior to remicade, I was dependent on prednisone, having regular accidents, and bloody diarrhea. Now, I am in a symptomatic remission with one bm a day and no urgency.

My answers to your questions are in blue below:

mlena89 said...
if I test positive again can Cdiff kill me if I'm on remicade?No, CDIFF on remicade is no different than without.

should i tie up any loose ends at the dentist before going on remicade? before or after makes no difference. I've had dental cleanings and other work done since remi, no different.

Also, can I get any advice about this drug? Is a lifestyle change required once you go on it? No, I've been on remicade for over a year and my lifestyle hasn't changed. Well, I do feel healthier now but that was not your question. Am I more prone to infection or just more vulnerable once I contract one? Yes, you are more prone to UTIs, bronchitis, sinus infections, and should you get them they need medication sooner. Pretty much see your doctor as soon as you suspect you have one, rather than trying to wait it out. You do not have to worry about cuts and other little things or become a germaphobe or anything lol. You might have an extra cold a year, and instead of lasting a week, it might last 1.5 weeks.

Posted Today 5:30 PM (GMT 0)
if i were u, i'd try fecal transplant before remi
Posted 12/4/2014 4:20 AM (GMT 0)
I've been on remicade since 2009 with no side effects. It changed my life and for the first time in years, I realized what "normal" people feel like. I did get a headache during the titration phase but nothing else. As far as lifestyle, I work in healthcare with direct patient contact, so I make sure I avoid patients with TB and I make sure I use PPE with other infected patients. I have never had an issue with compromised immunity of being on remicade. You are more susceptible to infection so just practice good hand washing and don't jeopardize your health by being around sick friends or family. My boyfriend had a stomach bug this week so I didn't hang out with him. 😷 As far as loose ends, you need to have current tetanus and negative TB test prior to starting remicade. My pcp had me get a pneumonia and hep A vaccine this year as well so maybe ask about those. I was VERY reluctant to go on remicade but once I started flaring more often, I realized it was time. Now I can eat the spicy chicken sandwich at chic-fil-a!
Posted 12/4/2014 6:49 PM (GMT 0)
I would definitely NOT fear Remicade.   I have been on remicade since 2005. It worked wonders for me till almost now. Still had a few minor flares here and there, but for most part it allowed me to be 'normal.' Aside from minor headaches if the medication is run too quickly, I haven't had any trouble with it. I keep praying that I haven't built up anti-bodies to it and that it is starting to fail me.   I would try everything before having to result to surgery. L  
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