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Been in remssion for over a year..taper colozol or no......?

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Posted 10/15/2011 7:13 PM (GMT 0)
HI its been awhile since ive been here. Hope everyone is feeling better and hopefully in remission. Im glad to report ive been in remission for well over a year now. (knock on Wood) I take 4 Colazal a day..2 in more 2 at night. I was thinking about tapering down to 3, then maybe two. i know i know...its risky...any thoughts.
Posted 10/15/2011 7:19 PM (GMT 0)
No, don't do it....obviously it's working and is a low dosage already.

If you do have any symptoms starting, you should add rectal meds and if necessary, up the Colazal depending on symptoms. One of the earliest symptoms that many miss is harder/smaller stool, "constipation", more gas and stomach discomfort.

But, on the other hand...it's your butt. I would advise not to based on experience and medical information/research. Many have tapered off their meds only to have a difficult time to get their new flare under control. But, we learn through experience...there are some who are on NO meds and are doing fine. It's basically your call.

Congratulations on feeling well for this long.
I hope it continues for you.

q
Posted 10/15/2011 9:42 PM (GMT 0)
I have been taking the same dosage of colazal that you do and have been doing fine for a year now. I have thought of stopping the drug once I have been in remission 2 or 3 years. Doctors used to do that and are doing it again. There is no evidence that taking less than 3 grams/day does you any good.

I think the risks and benefits of taking any of the 5asa drugs long term are not really known. Basically the risks and benefits are extrapolated from clinical trials lasting only a year. I really wonder if people with less severe and easily controlled UC should be on drugs all the time or what taking these drugs for 20 years does to you. Every day it seems you read about a drug that has been on the market for decades being removed because suddenly it turns out to be unsafe.

I have brought this up with every doctor I have seen since diagnosis and not one could answer the question. It's like asking a stockbroker if there is ever a time NOT to buy stock.
Posted 10/15/2011 10:17 PM (GMT 0)
There are absolute benefits to being on under 3000 mg mesalamine. I'm proof there is, considering it's OVER 20 years since I've been using the meds. Now, that's in conjunction, oral with rectal.

Side effects? could be liver, could be kidney.

The best side effect...minimal flares. NO precancer/cancer/polyps...

q
Posted 10/15/2011 11:15 PM (GMT 0)
We are on colazal Quincy. 3 grams of colazal breaks down into only 1.06 grams of mesalimine. You have to take almost 3 times as much colazal as asacol for the same effect.

I kind of think if you need rectal meds on top of pills and you still flare 2+ times a year that it would prove whatever you are taking is not enough, right?
Posted 10/16/2011 1:45 AM (GMT 0)
I would not reduce Colazal below 6 capsules daily in remission. From experience I know that I flare by the end of 3 weeks without meds. It's YOUR body and your decision whether to drop med entirely. Some UCers posting here have tried that, got along o.k. for varying periods of time, but then developed serious flares that are hard to bring under control & may require taking immunosuppressant drugs indefinitely thereafter. Mesalamine has been RXed since the 1970s; it is a high-powered salicylate considered to be relatively low-risk with proper usage & continuing medical monitoring. Colazal & Asacol are not interchangeable; they have different delivery properties! / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 10/16/2011 2:03 PM (GMT 0)
This is an interesting thread for me because for the twenty years I've had UC, I've only taken meds to get myself out of a flare. It's just in the last six months that I've started to stay on the 5-ASAs. My GI told me that even if I was symptom-free during periods of remission there might have been microscopic inflammation that can lead to dysplasia, etc. She basically shamed and frightened me into taking harsher drugs (prednisone) and staying on the 5-ASAs to avoid possible dysplasia down the line.

I think the bottom line with UC, as in everything, is that it's a crap shoot. If the drugs keep me from needing surgery down the line, I guess staying on them is the way to go, despite the side effects. But they certainly don't provide a guarantee of good health forever...nothing does. People seem to flare sometimes in spite of staying on maintenance meds.

I have an aversion to pharmaceuticals but a growing sense of my own mortality and the need to stay healthy for my young children as long as I can...so for now I'm pumping myself full of chemicals in the hopes that I stave off another major flare.
Posted 10/16/2011 2:12 PM (GMT 0)
I think I remember my GI telling me he likes to have his patients in remission for 2 years before tapering meds. I've been on the max. dose of Asacol since 2007 and haven't attempted tapering. I'd like to at some point but I don't want to mess with a good thing.
Posted 10/16/2011 4:24 PM (GMT 0)
Thanks everyone for the replies. Im just going to hang on and keep taking this lower dose for awhile and see what happens. A little history. I was fortunate enough to be diagnosed with UC back in 04. I went into remission a few months after that for a good 5 years im guessing. I stopped somewhere after the first year or so of taking it, was med free for about 4 years or so, then bam saw some blood on the stool out of nowhere. it had been so long since my first flare it was weird, almost like i never had UC..like something that happened once and was over.. Went to my GI got back on colazal and Canaza, got into remission again, then flared again 8 months later..I think due to a high dose of prescription ibuprofen...which was stupid to do, flared a couple days after i took it..now here we are in remission again for about 13-14 months. I would love to go off the meds. at least taper down. i think the two year theory seems pretty good. im just kinda worried what this stuff is doing long term. i know its not a super high dose but still.
Posted 10/16/2011 8:33 PM (GMT 0)

AZYooper said...
We are on colazal Quincy. 3 grams of colazal breaks down into only 1.06 grams of mesalimine. You have to take almost 3 times as much colazal as asacol for the same effect.

I kind of think if you need rectal meds on top of pills and you still flare 2+ times a year that it would prove whatever you are taking is not enough, right?

 

Gee, I don't know the answer, and don't think that the comparison of actual mesalamine is the point. 

Not to continue this point, but I've had UC obviously for 25 years, diagnosed 22+ years ago and never been as bad in the first few years once started on 5ASA (oral/rectal)..     My scopes are great (although I don't have the results of my scope on Wednesday), my doc is impressed and I increase my meds when others would wait till the most obvious. But it was a learning process, which it seems I'm still learning as I age.   I have different issues now, and have to make changes accordingly.

 Extremely subjective, so in reality...my meds are enough.   Long-term on lowest dosage to have me functioning well and to have good scopes is much more than adequate.  I can up my meds when I need to....not much one can do when one is riding on the top of the med scale consistently. 

I miss the point where people believe they should be in a total remission for extremely long periods of time and are considering it a failure if it's not.  As well, that being on medications "forever" is also a failure.....say what???  I'm way in the future compared to many of you, but I do remember that it's like to imagine having this forever.  not so bad, although I'd prefer to not at all.  I'm sick of focussing on my ass. 

 UC doesn't go away.  I don't see what the beef is with what I'm doing since I'm still maintaining symptoms, again it's subjective.   Fear of flares or believing that it was caused by  eating a piece of toast seems denial to me.  What many miss are the small nuances that are telling symptoms that something's going on.  Will it get worse, remain the same or improve...no one can tell.  We do what we can to continue our functioning and to have our butts and guts feel better.  Symptoms for one that are mild can show up visually as a raging flare...the opposite can also be true.  There are a lot of variables. 

Oh, have I mentioned that I"ve never been on prednisone even at my worst of over 20 bloody, razor, white-knuckling diarrhea daily?   Eventually the meds worked, lower dosage orally, probably since my UC didn't extend fully into the sigmoid, but it was increased minimally.  Not started at the top and decreased.  Rectal meds, on the other hand, higher mesalamine dosage but only nightly, not twice a day.  Different perspective...success for me.  Yes, I needed a lot of patience and did question my doc about stronger meds.  He smiled. 

Please also remember that I have UC-related liver disease.  My goal is to maintain the status-quo regardless, and to have a life of some quality (again subjective) where my mind doesn't go to a dark place consistently.  I exist, I function, I improve, but I'm not perfect. 

In truth, I really don't care what people ultimately do, but I do have concerns.   I make suggestions based on my experience, common sense starting at the bottom of the med scale.  commitments can be with meds, with food, with lifestyle, with addiction to find a cure.  To those who have an aversion to rectal meds....I don't get it...considering where it starts, it's only smart to use them. 

And in reality...there is only a small following of rectal med use and success.   But we seem to be the ones who have the least amount of complaints, and most times....the least amount of support.   Another kind of risk, it seems. 

q

Posted 10/16/2011 11:47 PM (GMT 0)
Amen, quincy. I appreciate how much help you give everyone on this forum and how you operate from a place of always trying the less harsh drugs first. I have an aversion to rectal meds but I know you are absolutely right about treating it at the source. As a long-timer with the disease I resonate a lot with what you're saying.
Posted 10/17/2011 12:39 AM (GMT 0)
I'm only on 1.5 g of mesalamine daily, plus an enema twice a week, I've been in a symptomless remission for almost 2.5 years now. Yes, that is the supposed max dose of Apriso, but I suppose if I start to flare I'll fist up the enemas to nightly, and if things aren't getting better, switch to Asacol until I'm in remission (since one can take a higher daily dose and be w/in the recommended limits) or see if my insurance will clear a higher daily dose of Apriso.

Unlike quincy, I did use pred (albeit a pretty quick course by comparison to what I've seen) to kick the flare, but I had little choice in the matter. I had a newborn son to take care of, I wasn't being the mom I needed to be, and I had an interview I *had* to be well for, so flat ran out of time to give the mesalamine drugs more time to work. But I did give them a month and a half before starting pred.

Anyway, to the OP, I probably wouldn't drop the dose. I think colazal is safe for long-term use. Like I said, I've been in remission for 2.5 years now, and have no plans to change anything as of yet. We'll see what my scope this week shows, and I might think about dropping it some. But I really doubt it.
Posted 10/17/2011 8:55 AM (GMT 0)
Quincy, you say on or under 3000 mg. Asacol. Does that mean that in taking 3200 it has long term problems. I agree with Sara and others. If it ain't broke, don't fix it. I'd like to drop to 6 a day, but I'm staying at 8.
Posted 10/17/2011 9:13 AM (GMT 0)
No, that's not what I'm saying...in other words, I say I don't have pancolitis so do fine on 2400mg.
I say if you don't have to be on the highest oral dosage continually, then lower it to maintenance, which you have.

I'm saying that there is benefit to under 3000mg of mesalamine. It's also important how it's delivered. Obviously, asacol works for me since it's literally pulverised in my colon. For some, another 5ASA with a different dissolving mechanism to dispurse/deliver is required.

8 seems reasonable...you can increase if you need.

Some have to stay on a higher dosage, but best to climb than start at the top....my opinion and seems my doc's as well.

q
Posted 10/17/2011 10:05 AM (GMT 0)

jazzgtrl4 said...
HI its been awhile since ive been here. Hope everyone is feeling better and hopefully in remission. Im glad to report ive been in remission for well over a year now. (knock on Wood) I take 4 Colazal a day..2 in more 2 at night. I was thinking about tapering down to 3, then maybe two. i know i know...its risky...any thoughts.

the maintanance remission dose in my country for mesalasine is 1500 mg/day if taken oraly (i am talking about salofalk/pentasa).
don't know about colazal.

for rectum only involved UC - i believe it's 750mg / day (via suppositories)

personaly - even in remission - i am using 1500 of oral mesalasine / day. and if i feel something's going wrong i hit the butt with some suppositories or enemas for a couple of days.


My GI said after my last C-scope done in feb that i should lower to 500 mg / day (1 pil). I disagreed with her, at least until this time, and we agreed to keep the dose as it is.

I know people who are in clinical remission for decades and do not take any drugs. But i know those were mild cases of UC.

In another chat with my GI - when whe discussed a temporary lack of medication in pharma's - she told me that UC'ers could go on for months if in remission without 5-asa's, but it's better not to.

So i believe you can try to lower the dossage a little bit if you wanna experiment and if you feel perfect. Although it's a thing that i would do it gradyally - one pill (500mg) over 4-6 months, then one more.

P.S.
I do not agree with quincy for many things - but i agree on two major points:
1. Treat from both ends principle.
2. Daily medication it's not a failure if we consider the type of disease we have.
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