Has anyone used high-dose mesalamine long term?

I've been on 4800mg/day Asacol HD for four months now, while it's only been approved for use for 6 weeks. Doing my reading on Asacol, it seems like higher doses probably aren't really more dangerous, but anyone know more? I'm not dead yet! I'm studying abroad right now so it would be a huge pain in the ass (hahaha... anyone? no? anyhow...) if I went into a flare so my GI doesn't want to try lowering my dose until I'm back in the states.

He actually told me, and I quote, "there are no side-effects". Which is patently false so I don't trust him entirely when he tells me to attack-dose a drug for ten times as long as it's approved for.

Post Edited (Lacaille) : 3/14/2013 5:55:00 AM (GMT-6)

I've been on 4000mg a day of Asacol tablets, plus 500mg suppository for a year now, without any side effects. So, to echo the previous comment, I think it seems to be fine to be on this long term (assuming it continues to be effective!), and my gastroenterologist stated to me once anything above around 4800mg has never been proven to have any extra benefit.

Good point by InSoFla there. I should have mentioned I have to get a blood test every few months to make sure my kidneys are still in working order, but I have been advised that as long as they are, it's OK to keep taking the Asacol indefinitely. I did get an inflamed vein my local GP compared to phlebitis as a result of the nurse being careless taking the blood, but thats another story.

I have given urine samples although not on a regular basis as with the blood tests. I will make urgent mention of it to him, as I am in regular contact with him at the moment. Thanks for the advice.

4 g/day Pentasa for a few years now. Haven't had liver/kidney function tests done like I should either.

I am maxed out, 12 salofalk tabs and two rowasa enemas daily. I get liver and kidney function tested periodically and so far no issues whatsoever. The Doc is right. mesalamine has virtually no side effects for MOST people, which is rare for a U.C. drug.

I will try to taper off my second a.m. enema once the dust settles from my latest flare.

lacaille,
Hi, my name is Randy from Canada.

I have been taking 3,000/mg of Asacol now for 34 years (with other antiepilectic meds for my epilepsy) with NO or minimal side affects.(for me I get stomach bloating, so much that I look like I have a beer belly and I drink very little) So if that's not long term then what is.

Up until about 10 yrs ago, I was having flare ups every 2 yrs that lasted about 2 wks.
When that happened, my GI told me to double up on the meds, as well as a nightly medicated enema(forget what it was called)

This meant that I would have to increase my doseage of antiepilectic meds bc the Asacol would paint a protective barrier on the wall of the bowell and therefore making it more difficult for the other meds to penetrate the bowel and intestine, to enter the blood stream.

My GI and Neurologist both agree that it is not uncommon for an Epileptic to contract some sort of bowel problem or IBS since both conditions go hand in hand and are STRESS related.

I too get regular blood tests to check for liver damage and AEDs and Asacol are at the therapeudic level.

Other than that, the Asacol and AEDs seem to be working well together.

vicb said...
I was first diagnosed with pancolitis in 2001. It took several months of prednisone with a very slow taper to achieve remission. I maintained remission for approximately 10 years while taking a maintenance dose of 4800mg/day of asacol. I was feeling so good, eating anything I wanted and started getting lazy and inconsistent with the asacol. One day out of the blue I began flaring and spent the next two years trying every med, diet, snake oil, sacrificing live chickens naked under a full moon. Nothing even slowed it down. I was having 20 + bm's a day with almost complete incontinence and debilitating nausea. It got so severe surgery was my only option so now I spend more time on the ostomy forum than here. Based purely on my single anecdotal experience I would recommend staying on the high dose Asacol maintenance assuming you can tolerate it and monitor liver and kidney function regularly (which I did).There are studies that long term Asacol therapy can decrease the cancer risk.

This is the kind of thing I wonder about too. It's excellent that Asacol kept you in remission for so long but I wonder if that flare would have come about eventually anyhow and if some sort of mesalamine dependence was a factor in its severity. I've been trying to scrape up some info about that but as far as I can tell we just don't know.

Thanks for the posts all, I had no idea long-term high-dose mesalamine is so common.

Randy...asacol wasn't approved for use till 1997. So, I'm assuming you were on Sulfasalazine before you got on Asacol?


q

kazbern said...
Lacaille, you need to read vicb's post more carefully. He got into a flare because he stopped paying attention to his Asacol dose.

Once he flared again he couldn't get into remission. Was that because he'd developed a resistance to the Asacol? It's impossible to say. Mesalamine is not a good med for inducing remission - for that vicb used prednisone the first time around - he didn't say what he tried the 2nd time.

I realize that, I was wondering if the flare would have eventually come about anyways, that is to say, even if he had been good about taking his medicine. I thought that was pretty clear in my own post but whatever. Anyhow, as far as I can see Asacol generally is not effective at keeping people in remission for 10 years, and I have to wonder if long-term Asacol use can exacerbate flares down the road, which would be different from Asacol resistance. For example the body, in response to not being able to produce inflammatory products, may try to expand its capacity to produce such products, which would lead to, if ever the Asacol were to be withdrawn, a more serious inflammatory response than there would be if the body had not developed that extra capacity. That would be an example of mesalamine "dependence". Once again, I looked around for research but apparently we do not know the answer. But these are the kinds of things that keep me up at night.

Post Edited (Lacaille) : 3/15/2013 11:04:06 AM (GMT-6)

Well, Lacaille, I don't know how you have come to the conclusion that Asacol cannot keep you remission for 10 years. vicb didn't use Asacol correctly and flared. Are there other data you have that shows people flare while taking Asacol as directed?

There has been some discussion here about "maintenance" doses. I  reduced my mesalamine dosage from 4g to 3g several years ago, mostly out of laziness, but I've been good about keeping it around 4g/day for the last 4-5 years. Part of my challenge was remembering to take the midday dose, until my GI just told me (and many folks here said this too) to take half in the morning and half at night. That works much better and keeps me on my regular dose.

kazbern said...
Well, Lacaille, I don't know how you have come to the conclusion that Asacol cannot keep you remission for 10 years. vicb didn't use Asacol correctly and flared. Are there other data you have that shows people flare while taking Asacol as directed?

Yup I've seen a good number of studies demonstrating that. Here's one: http://www.druglib.com/abstract/pr/prantera-c_aliment-pharmacol-ther_20091101.html

If you're interested this is a good list of studies involving Asacol: http://www.druglib.com/druginfo/asacol-hd/abstracts/

I didn't say Asacol can't keep you in remission for 10 years, I said that as far as I can tell Asacol does not keep most people in remission for 10 years. Some people have been in remission for more than a decade just using Asacol, but many have flared severely and needed to go to more aggressive treatment. There is no ten-year research but I have made this observation while reading these forums. And shorter term research does show that proper use of Asacol does not remove the possibility of flaring.

kazbern said...
I'm sorry, but the first paper you listed shows that most people were in remission at the end of the study, which was 1 year long:

"In the intent-to-treat population, excluding those with major protocol deviations, 68.0 and 65.9% patients in the 5-ASA-MMX and Asacol groups, respectively, were in clinical remission (P = 0.69), and 60.9 and 61.7% of patients, respectively, were in clinical and endoscopic remission (P = 0.89)."

That is true. This is what you asked me for:

Somebody said...
Are there other data you have that shows people flare while taking Asacol as directed?