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Questions about Infliximab, Nicotine patches and diagnosis

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Ulcerative Colitis
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Posted 1/19/2015 6:22 PM (GMT 0)
Hello, I have just got back from the doctors (GP's) and I have a few questions, I hope that's ok.

1. If you start using Infliximab, can you still take Mesalazine and steroids? Apparently the hospital doctor is considering Infliximab. The GP doctor gave me a leaflet, and it sounds ok, but I'm worried in case they take my Asacol away. Also it makes me feel safer to have steroids to take when I am bleeding, just in case.

2. Has anyone tried Nicotine patches, and what were your experiences? I'm really keen to try them, but my GP doctor wasn't keen. She said she wouldn't recommend them unless under expert supervision. Is the expert she's referring to a hospital doctor? I was wondering if one of them would give me permission, as they are specialists in gastroenterology, as opposed to just a GP.

3. She also said that they also use colonoscopies to see what is going on, and whether their initial diagnosis was correct. This really worries me. I was diagnosed in 2002, and they did do a colonoscopy once I was in remission, I can't remember what year that was, but it would have been around 2003. I also had a sigmoidoscopy in 2010, whilst in hospital.

I don't know why, but I would be really upset if I found out that I had Crohn's, and not Ulcerative Colitis.

Does anyone have any thoughts? I'm going to have a Google, but everyone here is so knowledgeable, I thought I would get better information here.

Thank you :-)
Posted 1/19/2015 7:39 PM (GMT 0)
You can keep taking Asacol while you're on Remicade so don't worry about that.

As for nicotine, i have heard the people who are most successful with it are people who smoked in the past. Were you a smoker? I guess it's not ALWAYS the case but it seems that the large majority of people who are helped by it are past smokers. I am sure she meant that you should work with someone, a GI or whoever you're comfortable if you're going to try to self-medicate your UC.

Colonoscopies are definitely a good idea for looking at the situation. They will not tell you whether you have chrons via a colonoscopy. They can say the inflammation is consistent with UC or Crohn's from the pathology of the biopsies but really you need small bowel imaging to get a real answer. The scope is good for determining the status of the inflammation. If you haven't has one since 2010, it's not a bad idea to get one. I personally hate getting them too, between the prep and the loss of a day of work, it's unbearable.
Posted 1/19/2015 7:59 PM (GMT 0)
You definitely should keep taking your Mesalamine, as it has a big role in preventing colon cancer. If the Infliximab is effective, you will no longer need the steroids, and that's a very positive thing. Steroids taken over a long period of time are guaranteed to produce some life-changing side effects.
Posted 1/19/2015 8:35 PM (GMT 0)
Thanks for the answers, I've been googling since I posted this, but I think the internet is like the Goblin King in Labyrinth-you have to use exactly the right words or you get nowhere!

notsosicklygirl-Thanks, that's a relief! Asacol helps me to stay in remission better than other things I've tried, so I am very attached to it. I don't want to try any new treatments which would require me to give it up.

No, I have literally never smoked, not even one cigarette. I am really keen on trying patches though, I am going to ring the specialist gastro nurse at the hospital tomorrow-the trouble is, you are supposed to leave a message, I always do and she never rings back, it's very frustrating. The GP has given me the secretaries number to try.

I have booked a colonoscopy for May. My sister is coming with me, which is the only reason I've been brave enough to book it. It has always been consistent with UC, so I'm trying not to worry too much. They did biopsies last time, I remember. What's small bowel imaging? I have seen photos from the first colonoscopy in my medical file at the hospital.

Judy2-Thanks, it's me that wants to cling on to my Asacol, I just always worry that the doctors will try to take it off me! Yeah, I was a big fan of steroids, until I got moon face for the first time. Now I'm more wary. I know there are other effects too, just that was a wake-up call.
Posted 1/19/2015 9:26 PM (GMT 0)
1. Yes. Hopefully you can get of the steroids though when it kicks in for you. That's the purpose of a biologic. To get you better so you don't need that type of drug.

2. Yes. You don't need permission to try the patch. Read up and try it. Ebay has some of best prices on them. Tried, but not put one on in a month due to flu last month. I quit cold turkey off 21mg patches first day I got sick, lol. May have contributed to me feeling lousy while sick. My biggest issue is after month use started to get rash just about anywhere I put one on. I can only wear one on the bottom of my foot with no rash.

3. Sounds like time for you to get scoped again. I get one every couple years now.
Posted 1/19/2015 11:46 PM (GMT 0)
I don't know the standard of care in England, but the emerging recommendation is to take Remicade with some sort of immune suppressant to prevent forming antibodies that could lead to it stopping working.
Posted 1/20/2015 1:59 AM (GMT 0)
Uc is limited to the large intestine and patients with it need only colonoscopy for diagnosis. Crohn's can be anywhere in the digestive tract from lips to anus. As such, upper GI tract diagnostics are used. It might be a scope that goes in your mouth and gets down to the small intestine. You can also get other scans done on the small bowels to look for blockages and inflammation.
Posted 1/20/2015 2:51 AM (GMT 0)
I too was attached to my asacol and continued to take it for quite a while on remicade. It was like a security blanket. My doctor finally told me I could stop taking it whenever I felt comfortable doing so. I waited a few more months and stopped cold turkey without any problems.

As already stated, the goal of remicade is better remission to eliminate/greatly reduce the need for steroids. I went for about 4-5 years without a flare while on remicade. I am currently on my 2nd prednisone taper in 12 months but my flares were not because of remicade failing, just an unfortunate cascade of medical dominoes.
Posted 1/22/2015 2:07 AM (GMT 0)
Thanks for all the replies.

Dr-A-Do you know which dose of nicotine patch I should start taking? I am guessing the largest, then cut down, is that right?

I'm booked in for May, as long as I don't get too scared again.

DBwithUC-Not very good from my experience, you have to get very ill before they will do anything, and they dictate rather than discuss treatment. I might have problems there, I can't tolerate Azathioprine, although that is the only one I have tried.

iPoop-Thanks, last time I had a sigmoid (2010), they said my UC only goes up to the 1st corner, I can't remember the technical name for it. EDIT-Just googled and I think it is called the sigmoid flexure.

platinumpixie-Yeah it is my security blanket. I know what you mean, I'm never sure what causes my flare-ups, the only thing I don't keep under tight control is stress, and I can't really avoid that. When I was hospitalised in 2010, I hadn't even been stressed, I'd been quite happy (until getting ill obviously).
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