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Ever go off Asacol?

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Crohn's Disease
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Posted 12/22/2010 7:47 PM (GMT 0)
I recently saw my gastro and he said he thinks he may recommend stopping Asacol in the future. He said he doesn't think it provides much benefit. This is counter to what I've been led to believe, by gastros like Sunanda Kane who preach the importance of taking your meds like Asacol.
Posted 12/22/2010 8:05 PM (GMT 0)
I am one who has been on just Asacol for over 5 years. After my first resection they told me I didn't need to take it anymore, so I stopped it. Got sick pretty soon after and ended up needing another resection only 3 years after the first.

We also have members (Crohnie Too among others) who decided that their Pentasa (sister med to Asacol) could be reduced or stopped all together, thinking its such a mild med it won't be a big deal. All had their CD start giving them grief right away. Went back on the meds and went back to feeling well again. In my eyes, if it ain't broke, don't fix it.

JMHO and Hugs~
Posted 12/22/2010 8:18 PM (GMT 0)
Cimzia stops the inflammation before it happens. Asacol treats the inflammation topically. My hubby takes both remicade and Lialda (same as Asacol really). The basic thought if Remicade doesn't fully stop the inflammation from happening, you have something that helps heal the inflammation. My hubby's GI left it up to him as to whether to take Lialda. In fact, my hubby is on both Lialda and Canasa suppositories. It was working for him, and as Gail said, "if it ain't broke, don't fix it."

Just my 2 cents.
PV
Posted 12/22/2010 9:17 PM (GMT 0)
I've been on it for 20 years. Every time I've tried to stop taking it, about 4 days later I start to flare. So, I stick with it.
Posted 12/23/2010 1:11 AM (GMT 0)
I agree with the others. I only take 4 asacol tablets a day. And at one time I was only taking 2 a day for a couple of years, thinking it wasn't doing anything anymore and I was feeling pretty good. I stopped taking it and flared within 2 weeks. Actually, I've stopped it several times and had the same experience each time. So, I will probably drop down to 2 tablets again sometime soon...but do plan to stay on them.
Posted 12/23/2010 5:52 AM (GMT 0)
I would say for Crohn's disease, mesalamine derivates do close to nothing. Most people may transiently respond, but it certainly doesn't change the natural history of the disease. An article was recently published that showed drugs like asacol are no better than placebo for Crohn's disease. See link below.

http://www.ncbi.nlm.nih.gov/pubmed/21154400
Posted 12/23/2010 6:51 AM (GMT 0)
Hmm, that study appears to be about inducing rather than maintaining remission. My impression, from Sunanda Kane and some other gastros, was that Asacol and similar drugs are important for the latter. But my gastro said that when you're on a drug -- like an immunosuppressant -- that's actively combatting Crohns, Asacol isn't doing much. As opposed to a remission induced by prednisone, which you get off of.
Posted 12/23/2010 7:11 AM (GMT 0)
I stopped taking Asacol for a while when I was on a high dose of prednisone and in a massive flare. I didn't get better or worse at the time as I was pretty stable from the prednisone. A few weeks later, I started having symptoms and started Asacol again. The jury is out as to whether it does anything for my condition. It did help me get into remission with an earlier flare and it helped me stay in remission for over a year.
Posted 12/23/2010 1:13 PM (GMT 0)
jpnutrition - have you taken asacol? Or are you citing the article merely to give information? I can't access the link, but you say this, "Most people may transiently respond, but it certainly doesn't change the natural history of the disease." What does that even mean? If it works, it works, right? And I think that it really depends on where your Crohn's is located. Drugs like asacol are intended to have a local effect in the large intestine/colon area - so no, that is probably not going to help someone with Crohn's in the small intestine/T.I. area. I wonder if this article you posted (which I can't read, link won't pull up article, sorry!) takes that information into consideration. I just can't believe that they would say its effects are no better than placebo when there are so many people taking it with evidence to the contrary. I know that it is NOT in my head that about 4 days after I stop taking it that I start to leak mucus from my bum and I start to have accidents and can't hold my bowels. If I wait about a week, blood returns too It's not as severe as if I were to stop taking HUMIRA or prednisone, but it DOES have an effect.

So, I'm not bashing YOU jpn, I'm just really curious about this article and your post. It doesn't seem like credible information. Otherwise, why would doctors keep prescribing it with success if it were really worthless? Interesting.
Posted 12/23/2010 1:41 PM (GMT 0)
I am not on asacol but was on it when I was first diagnosed with Crohn's. To say that it is not better than a placebo is somewhat misleading because it does have proven beneficial uses. Being that it is a lower tier medicaton, it may not get the recognition it deserves in helping those with mild disease or are in remission. As for going off of the medication, as long as you are still using your cimzia to maintain your remission you should be good. You really need to ask yourself whether or not you trust your G.I. and want to follow their medical advice. If they feel like you can stick with Cimzia and be fine, I would be for it because it is one less medication. Make sure that you do not drop all of the medications and stick with atleast on med to control your disease.
Posted 12/23/2010 2:13 PM (GMT 0)
I too have to respectfully disagree with jpnutrionist. There are multitudes on this very forum who have had success in maintaining their CD in remission thanks to meds like Asacol and Pentasa. And I personally have seen in the years I have been on this forum many many members who tried to stop their 5asa's and have the disease flare again. So these meds do work! By the way, my CD is in my TI/Cecum area. Before my resections I successfully used Pentasa during flares, and afterwards have had great success with just Asacol. JMHO
Posted 12/23/2010 9:38 PM (GMT 0)
I had my second small bowel resection in 1997.  I don't recall when I started taking Asacol, but as best I recall, I think I took it after my resection til a couple years ago.  I was surprised I've avoided any further resections since then.  I actually was doing quite well,  and surmised that my good fortune was due to the skill of my 2nd surgeon rather than the Asacol, so I quit taking Asacol.  Seems like not long after the problems began and I've had lots more pain.  The gi's seem to uniformly believe that my good fortune was not due to the Asacol.  However, I've gone back on the Asacol during the past week or so out of desperation/pain, this time dosing 3 pills 3 times per day instead of taking them all at once.  I've felt a ton better since taking the Asacol this time.  I'm actually starting to wonder whether Asacol may in fact be quite helpful.  I'm going to continue with it and see how it goes.  You might consider upping the dose or spreading it out over the day if you take it once daily as I did, and see if it helps.  I've read that with animal studies, Asacol can be ingested in massive quantities and the animals don't die.  I think I read about dosages that were tens or hundreds of times greater than a typical human dose by bodyweight.  That's why I'm not too worried about upping the dosage.  I think someone on this site said they take 15 pills per day.  I myself take 9 of the 400mg pills per day.  I may inquire with my doc about upping it more.  I'm no expert of course - that's just my story.  Good luck in getting it figured out.  It's no picnic is it.
Posted 12/23/2010 11:07 PM (GMT 0)
I've gone off all the 5-ASAs, as I couldn't tolerate any of them.

Nowdays I'm (relatively) happy to be med-free. The Crohn's isn't in remission, but the symptoms seem mild for superficially severe disease. Would rather not have it, but can live with it. *shrug*
Posted 12/24/2010 7:06 PM (GMT 0)
I am on Asacol 9 a day. I take them all at once, but thanks to your post I am going to spread them out. I didn't think it would make much of a differance. I just took them in a heap because I would often forget and miss my dose. Thanks and I'll let you know if I have any change.
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