The Mayo Clinic And Mesalamines

I can hit that on the nose! It's because in the beginning none of us want to consider our doctors who say "and take these meslamines, you'll likely be on them forever". That's a terrible thought. "why would anyone with ulcerative colitis, other than those allergic to them in some way, object to the regular, long term use of these drugs?" Meslamines (although a mild form of treatment) have their own side effects for every person. I mean i avoid the discussion topics in this forum that have to deal with 'hair loss' symptoms from these drugs, so i'm not to keen on them. I'm almost positive the insane-day long headache I get every month is due to meslamines (asacol).

Why wouldn't people use mesalamines if Mayo says they work?

1) They are very expensive in the US healthcare system unless you have full drug coverage. I don't and when I took Asacol I paid (IIRC) $700/month out of my pocket. It took me half the year to get to my deductible. Many, many people simply cannot afford this. Now my deductible is even higher just so I can afford a healthcare policy at all.

2)They do not work for everyone. As I said I did take Asacol, for many years, and never had improvement in my symptoms. In fact my proctitis became left-sided UC while taking it faithfully. The one mesalamine that does help my symptoms (bleeding mainly) is the retention enema mesalamine (Brand name Rowasa but I use generic). It is also expensive, see #1.

Just because it works for many does not mean it works for everyone. Some of us are special.

I do wonderful on them but if I wasn't on hubby's insurance I don't know that I could afford to take anything. Even generic drugs for UC are incredibly costly. I use generic Rowasa and a 90 day supply of that would be over $700. Granted I'm not on them nightly but what if I was. Same goes for Lialda...there would be no way. I would probably end up dead just because I couldn't afford meds and probably noone would insure me even if I had a job to pay for it which I don't.

Captain,
You have only been on this forum for less than a month. Stick around and you will soon hear stories about mesalamine induced pancreatitis, kidney malfunction, hair loss, and liver problems. That is one reason why mesalamine enemas are recommended so highly here, they affect local tissue and have less systematic side effects than oral meds like Asacol.

I am allergic to 5-ASAs. But I find diet modification to be very effective because I can avoid constantly picking at my internal scabs with triggering foods. Besides I find probiotics along with diet very effective for controlling my disease. And there are effective alternatives for example:

www.ncbi.nlm.nih.gov/pubmed/10022641
CONCLUSIONS:
Plantago ovata seeds (psyllium seed dietary fiber) might be as effective as mesalamine to maintain remission in ulcerative colitis.

www.ncbi.nlm.nih.gov/pubmed/19878610
Curcumin suppresses p38 mitogen-activated protein kinase activation, reduces IL-1beta and matrix metalloproteinase-3 and enhances IL-10 in the mucosa of children and adults with inflammatory bowel disease. We conclude that curcumin, a naturally occurring food substance with no known human toxicity, holds promise as a novel therapy in IBD.

Your statement "there are folks that resist the use of mesalamines hammer and tongs until the disease has advanced into less treatable forms" does not make much sense to me. Mesalamines may help relieve symptoms but they do not prevent the disease from advancing.

There are some fortunate members here who have thrived with 5-ASAs for years but the majority on those drugs have found out the hard way that they work only until they stop working.

I guess, Captain Ca-Ca, that not everyone presents with a mild case at first.  At least over on the Crohn's forum, there are plenty of people who get their diagnosis after having lost 40+ lbs from having diarrhea 20 times a day for just a couple of months.  For me personally, the onset of my illness seemed awful but it really wasn't once I got some perspective.  While the inflammation I've had in some spots has been described as "significant," my GI considers my disease mild and I'm ok with staying on the mesalamine track.

My rheumy tends to disagree with this approach and wants to hit that nail with a sledgehammer.  That's a personal choice, IMO.

In the beginning I did not want to take pills every day for the rest of my life (this is for you stereo).  Even now, 11 years in, I find I can get a real good story going in my own head about how good I'm feeling and wouldn't it be alright just to stop taking these meds?  I'm a slow learner, I guess, because I've done that two or three times in the last decade and it has always bit me in the behind, pun intended.

So I am staying on my meds.  I am using a generic of colazal now so it's affordable and that makes it easier.

I have the disease for now 13 yrs and still no remission it has been sigmoid affected colitis for like most of the time and u wold think mesalamines wold have helped but it didn't. I now after yrs suspect some allergy since the past 3 yrs I can't tolerate it, I feel worse on the enemas. I actually started with mild sigmoiditis. now it's moderate.

My daughter was diagnosed with moderate-severe pancolitis at onset. There were no symptoms at all until one day 6+ bloody stools which would not stop. Pentasa, sulfasalazine, enemas etc did little or nothing. My brother, on the other hand, has mild proctitis and uses asacol only to control flares, which it does quickly and easily. He's never been on this board or anything like it, as UC doesn't really effect his life. The people on this board are the ones for whom ASAs don't work (many) or for whom they don't work well enough to keep them out of a flare for a significant period of time.

Captain Ca-Ca said...
Browsing the Mayo Clinic's website this evening on the subject of ulcerative colitis, I came across this statement concerning treatments:

"Mesalamine can relieve signs and symptoms in more than 90 percent of people with mild ulcerative colitis."

One presumes that all flares of ulcerative colitis begin as mild disease and progress - however long it may take from days to weeks to months - through moderate to severe disease. If 90 percent of all mild flares can be reversed with mesalamines and if flares are difficult to identify in their earliest stages, why would anyone with ulcerative colitis, other than those allergic to them in some way, object to the regular, long term use of these drugs? This one would seem a no-brainer, yet there are folks that resist the use of mesalamines hammer and tongs until the disease has advanced into less treatable forms. In the circumstances, I find the resistance hard to understand.

 

Going many times a day while flaring is bad, taking 12+ pills a day for 1 single thing is bad also.

 

If taking 12+ pills a day induces remission I guess it's worth it. But either way it's not ideal. And + what everybody else said.

Probably because everyone's perspectives on having a chronic illness is different. Many who don't want to be on 5ASA has learned the benefit of the oral/rectal eventually.

 Some haven't because of aversion (their own or their doctors'), and some cannot use it at all. Not being able to use it isn't an issue here. And, any good gastro doc would check liver/kidney enzymes regularly throughout treatment/maintenance or check when trouble is suspected. At the very least, we, through connection and information gathering, have to be proactive and ask questions if things aren't as we believe they should be regarding meds, testing, etc.

I had the benifit of ignorance originally, but I got a good doctor who didn't overprescribe and had my best interests for long-term care. Sulfasalazine was first offered....but with my sensitivities, he nixed that and started me on Asacol the first appointment. With diagnosis leaning toward UC, the enemas were added the day of my first scope...a month after the first visit.   I'm also faithful to the meds because I respond to them.  I don't expect a flare to end quickly....all take time.  There's also a way to use the meds effectively, some are in a hurry to stop, some taper and maintain.

I also think that some believe that they can cure their UC without meds....but it's still a process of using something and adjusting for the rest of their lives anyway. Some are also wired to find alternatives, don't trust their doctor and are afraid of the possibilities of long-term treatment side-effects.  I don't want to ever use prednisone or the immuno/biologics.  I'd prefer my colon out.

I, for one, support the use of 5ASA oral/rectal, even to the annoyance of some. I don't, however, support starting patients on high dosages initially and patients believing the med doesn't work for them when the right combo of rectal/oral that can be increased if necessary.

Some docs, however, are afraid to prescribe even a basic dosage of rectal meds and have the patient suffering needlessly. It's trial and more trial if one doesn't work, then there's an option for another combo...but still in the 5ASA/mesalamine family.

I realise I use the word however a LOT...
q

killcolitis,

"My daughter was diagnosed with moderate-severe pancolitis at onset. There were no symptoms at all until one day 6+ bloody stools which would not stop. Pentasa, sulfasalazine, enemas etc did little or nothing. My brother, on the other hand, has mild proctitis and uses asacol only to control flares, which it does quickly and easily. He's never been on this board or anything like it, as UC doesn't really effect his life."

Well that's the whole point, isn't it. As explained in the Mayo piece, its mild disease that benefits from 5ASA drugs. Both your daughter's and your brother's experience with 5ASAs are completely intelligible. Inexplicably, they were prescribed for my introductory episode of UC when I was already in the john 25 times a day and it was all blood. However they were helpful keeping me in remission for 12 years and are just as helpful today as disease is once again attempting to gain a toe-hold.

"The people on this board are the ones for whom ASAs don't work (many) or for whom they don't work well enough to keep them out of a flare for a significant period of time."

That would seem to be true, yes. Many, as I did, probably presented with well advanced disease before treatment was even attempted. Its just too late for 5ASA under those circumstances.

I'm very grateful for Asacol and Rowasa. They gave me my life back.

Captain Ca-Ca said...
quincy,

"I don't expect a flare to end quickly....all take time."

I suspect all of us might benefit from your expanding on this thought, quincy. How about it?

Hey Captain, how old are you, I can't get a feel. I would venture in your 50ies.