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Scope today; symptoms good but expecting bad scope; would you go Remicade?

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Ulcerative Colitis
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Posted 6/4/2013 5:06 PM (GMT 0)
So, I have yet another flexible-endoscope today in a couple hours and depending on how bad it is, I might have to go on Remicade. My brief history: Before this nasty flareup, I was on daily 5g of Lialda and daily Rowasa. This flareup started at Jan 1st, 2013 and I was put on Prednisone (for the 1st time) at 40mg a day (12-20bms a day). The next week, I was put on 6mp at 50mg a day (a dosage of 1mg per 1kg of body weight). By April, my symptoms improved to 3-4 bms a day and he did another scope where he saw severe inflammation as far as the scope would go. After that scope he bumped my 6mp up to 75mg a day (a dosage of about 1.5mg per 1kg of body weight) at the beginning of April and 30 mg of pred. Did another scope at the end of April with no apparent change in my condition but he decided to give the 6mp more time and just in case have me do all of the necessary screenings for Remicade (tb, hep a, and a chest xray). Today's scope could be the determination if I need remicade or not.

My symptoms haven't been terrible though and that's the real kicker as it seems like there is a real disconnect between what the GI sees and what I feel as far as symptoms go. Right now it is 1-3 bms a day with most days falling somewhere in the middle. All bms are solid (some fluffy, and some smooth and more solid still) with no signs of blood or mucus. Urgency has been pretty darn good lately, with only the first couple hours of my day being urgent. I haven't had an accident in months. I am able to fart without worry of sharting myself too. I mean it aint bad, and I can't complain much about those symptoms.

Would you go the remicade route? I've been on pred for 5 months (GI says not to worry about that unless it has been continuous usage for 1-2 years or more) although I am starting to get a little worried about it myself. If I am still very inflamed in the severe/moderate category with at least a couple feet of continuous active disease from rectum into the sigmoid as I predict he'll seen in today's scope would you go Remi to potentially improve it's condition? I've never known remission... always had inflammation. Just quite a trip to so quickly go up the medication ladder to Remi already. Emotionally/mentally I am ready to accept Remi, had a couple months to think it over.
Posted 6/4/2013 5:33 PM (GMT 0)
Even though your symptoms aren't bad, I'd probably do it if you're still showing active inflammation, because:

1. I'm pretty sure the reason we UCers are at increased risk of colon cancer is becasue of the inflammation.

2. I'd want to get off of pred more than I'd want to avoid Remicade. My first GI said he wouldn't let me be on pred for any longer than 4 months at a time or more than twice a year before we'd explore different medication options. So even though your GI says that 1-2 years is OK, I feel differently.
Posted 6/4/2013 6:07 PM (GMT 0)

iPoop said...
I am able to fart without worry of sharting myself too.

I swear, this is how I know I'm improving--I can tell the difference between gas and a BM.

Honestly, I think it's really up to you. Your doctor isn't the one who gets to decide if you try Remicade or not: you are.

I have been very happy with Remicade, but if I could have gotten into remission without it, I wouldn't have gone on it.
Posted 6/4/2013 6:40 PM (GMT 0)
Off to the scope in a few minutes. Yeah, in the end it is my choice on the meds and I've been weighing my options for months now. Bananagirl hit the nail on the head there regarding which is worse remicade or pred and certainly the later is more disconcerting than the former. I believe it is right to say my cancer odds are elevated considerably as I have active uc disease present, which is a big reason they try to get that inflammation under control through the various meds. I believe if you are in remission then your colon cancer odds are about equal to that of the general population, if memory serves me right. Both are good points to make.

I think the pred is really masking how bad things are at the moment, as I know without it's 30mgs a day then my symptoms would be much worse. My dr says if I get off of the pred then I am likely to flare up again which I don't want. So, to me, it looks like a choice of being pred dependent or going on Remi, unless by some miracle the scope comes up clean and 6mp alone is enough. I pretty much think of my GI as my 'bad news dr' as it is pretty much all I ever get from him (meds for life, disease is spreading, still inflamed, need stronger meds, etc.) haha. I'd like to hear good news from this guy once I swear...
Posted 6/4/2013 10:34 PM (GMT 0)
Ipoop, how'd things go?

I hear ya on the climbing the ladder so quickly... I just went from 5asa to Remicade in 3 week hospital stay... ( throw in some prednisone for good mesure... )

I'd say get info from Doc. have your 6mp levels tested and then make a decision on that..

For me.. which I could have held off.. but not much choice.. Steroids were not working - mesalamine no longer working.... not enough time to go 6MP .... was big guns .. or surgery!! So far so good, 3 loading dose Remicade infusions and Id say I'm 90% better... (unfortunately not sure if remisssion yet as not scoped and dealing with steroid side effects.. )

good luck
Posted 6/6/2013 12:31 PM (GMT 0)
My scope went better than I thought it would. Perhaps the secret to getting a good scope is to expect the worst and complain on HW beforehand tongue

My GI said I am 'getting better' and that my inflammation stopped at 70cm which is still inside the sigmoid colon. We're going to try a very slow taper off of pred, details I will get on Monday, and for now hold off on the Remicade. I am suspecting if I run into any bumps in the road getting off of the pred then that will be his recommendation. I am pre-approved for remi at least (all req tests done).

So perhaps finally some good news from my bad-news dr.
Posted 6/6/2013 12:36 PM (GMT 0)
Hey, that's great! I'll keep my fingers crossed as you taper off pred.
Posted 6/6/2013 12:42 PM (GMT 0)
Ipoop, have you always just had left sided colitis? Many suggest thecancer risk is much lower with left sided disease (correct me if im wrong)
Posted 6/6/2013 12:46 PM (GMT 0)
Andy111, yes, my disease as been limited to my rectum and sigmoid colon since my initial diagnosis. The extent of my disease has since spread, initially 14cms to the now 70cms during that timeframe though. But I believe it is common for uc to spread upwards.

I believe it is true that those with more limited cases of uc, have more limited cancer risks than those who have, for example, pancolitis.
Posted 6/6/2013 2:13 PM (GMT 0)
Great news. Hopefully you continue to heal. COuld you use rectals 2x a day? Sometimes I use Rowasa before bed and a Canasa in the morning. That may help with the rectal inflammation.
Posted 6/6/2013 2:36 PM (GMT 0)
I had wondered about the twice a day rectal thing. I'll have to make a note to ask when I see my GI on Mon. Thanks for the suggestion.
Posted 6/6/2013 4:35 PM (GMT 0)
ipoop, great that you're improving. I also second the 2 times/day rectal med thing.
Posted 6/6/2013 10:32 PM (GMT 0)
good news :)
Posted 6/7/2013 12:40 AM (GMT 0)
Glad to hear that your scope came back with good news!

I was always more scared to stay on prednisone than I was when I had to decide to try 6MP... or Remicade... or Humira. I did achieve and maintain remission with 6MP after about 4 months and then I flared and needed Remicade which worked within a week. Humira didn't provide much relief for me for very long this past Spring. I just had my first surgery one week ago today and I am on the mend and getting rid of maintenance medications! A few more weeks of a Prednisone taper and I'll be done!

I have lived through 16 years of these medications and I wish you the best of luck with finding the right mix that gets you back to health!

-R
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