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Worsened UC from 5ASA meds

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Posted 10/17/2007 1:13 PM (GMT 0)
Every 5ASA med I have ever taken has worsened my UC.  Just wondering how many others here have experienced this.  Over the years I tried several different brans (asacol, dipentum, colozal and lialda) and the same thing happens, within 6-12 hours and even at the bare minimum dose- extreme abdominal pain, cramps, watery D, and bleeding.  And every time, GI's try and suggest grinning and bearing it to see if I become tolerant.  Not for me, thankyou.  Not going near them anymore but it is frustrating because there is no real maintenance drug out there apart from some very heavy hitters like the biologic therapies.

 

Posted 10/17/2007 2:12 PM (GMT 0)
Have you tried the older drug Sulfasalazine/Azulfadine? That's actually the form Elaine of the SCD recommends. I had problems with asacol, but have had good luck with sulfasalazine.

For what it's worth, I had problems with Primal Defense. Initially, it seemed to help, but then symptoms returned and quickly got worse. It may be worth stopping it for a couple of weeks to see if it makes any difference for you.
Posted 10/17/2007 2:18 PM (GMT 0)
I definitely understand, I can't take the 5ASA's and am going to the heavy hitters, I just can't keep on flaring, it's wrecking my life.
Posted 10/17/2007 2:26 PM (GMT 0)
Thanks for the quick response. I think 21 years ago when I first got this I was briefly tried on the straight sulfa and it made me very nautious. I have never tried that slow tolerance method beginning say with 1/16th of a tablet and so forth, because over the years GI's have always dismissed the old sulfa. I will ask my current GI about trying that, since every other approach to 5ASA has been disastrous.

Interestingly, it is asacol, colazade et al that seem associated with reduced incidence of UC getting cancerous, not the straight sulfa, I believe. But irrelevant for those of us who can't remotely tolerate the stuff.

Re PD- I have tried going off it for up to a week or so without effect, but I just ordered a big batch of other probiotics without the soil-based organisms and will try those for a couple weeks. On balance the probiotics I take (including PD) seem to stabilize things a little bit.
Posted 10/17/2007 2:34 PM (GMT 0)
A lot of folks have problems with Asacol. I've read where people claim it makes D and bleeding worse. D is one of the listed side effects, ironically.

PD seems to work for alot of people. I suspect the wheatgrass was a problem for me personally. I'm also a little wary of SBOs.
Posted 10/17/2007 3:16 PM (GMT 0)
There are definitely those who can't tolerate the 5ASA meds. Sulfasalazine has 5ASA in it..so if you're intolerant, you probably will be from that as well...but worth a try.

q
Posted 10/17/2007 3:37 PM (GMT 0)
You report having experienced nausea while on sulfasalazine yrs back. Did you take the enteric-coated pills? That could make a big difference in your tolerance level. The En-tabs do not usually dissolve in the stomach--- so less chance for nausea than with the regular "soft" pills. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily; seem to be back in remission) 

Posted 10/17/2007 4:42 PM (GMT 0)
Thanks. However, I did try the enteric sulfasalazine more recently and it instantly gave me carmps and watery D, unfort. I can't recall that from the non-coated one 21 years ago so that's why I was wondering if maybe that could be gradually tolerated i.e. without the worsening-UC effects the various coated 5ASA meds seem to have on me. (Dipentum, Asacol and Colazal all gave me exreme pain and even started me bleeding, i.e. seem to be inflammatory not anti-inflammatory in my case; and even the mesalamine enemas seem to ahve an inflammatory effect on me, albeit milder, incl. cramps and pain.)
Posted 10/17/2007 9:46 PM (GMT 0)
Colazal is okay for me. Pentasa makes me a little worse. Asacol or any kind of rectal mesalamine gives me horrid diarrhea.
Posted 10/18/2007 11:01 AM (GMT 0)
I used asacol for 6 years without problem. Now I can't use it - nor any other 5ASA med :-( Get awful cramps and D. I agree, its a shame the main maintenance drug can be causing us to have worsened symptoms...
Posted 10/18/2007 3:23 PM (GMT 0)
It seems that because most people do fine on them, hte pharms. spend alot of their time endlessly refining these 5ASA variants. Does nothing for those like me that get ghastly worse on all of them, but what can you do I guess. Having IBD means you are 1/1000 (maybe 1/500 or so nowadays), and not responding to 5ASAs makes some of us 1 in 100,000 I guess, lucky me. I wish they'd come up with another maintenance drug besides biologics. Have tried stuff like turmeric and boswellia but doesn't really do anything for me. (The latter seems to make me wors,e making me wonder if it is the same issue as with 5ASAs eg salicytates (sp.)). Funny thing is how for 9 years I had a total med free remission without any drugs; it's a crazy disease.
Posted 10/18/2007 7:33 PM (GMT 0)
The oral 5-ASA's give me problems, but so far I've had no problem with Rowasa and Canasa
Posted 10/18/2007 7:45 PM (GMT 0)
GI's keep saying to me that enemas should be tolerated even when the orals aren't, but enemas seem to be irritating to me too. In any case, asacol is 5ASA designed to release within the colon, so if that is irritating, than an enema should be too, because they both result in 5ASA in the colon. But I'm glad that your enemas work out for you.
Posted 10/19/2007 1:40 AM (GMT 0)
I can totally relate to Asacol making me sicker and making my flare worse, abdominal pain, urgency, bleeding, fatigue, headaches, and just feeling alot worse. And i get the same reply from my gi, it will get better in time, he refuses to change my meds. Very frustrating. It actually causes and makes my uc symptoms worse!
Posted 10/19/2007 2:01 AM (GMT 0)
I can't tolerate the 5ASA drugs either. Asacol was what my GI dr. gave me and on only 1 pill a day I had terrible cramping and constipation. So now I know I'm intolerant to mesalamine too.
And I'm also horribly allergic to Sulfasalazine and any form of sulfa really. I actually discovered that allergy 5 years before being diagnosed with UC. my dermo tried a sulfa wash to clear up my acne and I broke out in hives and had trouble breathing.
I am looking for a new dr actually because I'm currently not on medication and I keep getting worse. (and my old dr. knew i had a sulfa allergy and gave me a sulfa type drug anyway making me sicker) But every medicine just makes me sicker. And all the side effects of all the drugs are the same as the symptoms they are supposed to be treating! I'm very much in the mind set of all drugs are poison because before I sought treatment my UC was not that bad and didn't affect my life other than going to the bathroom 6 times a day rather than 3.
Posted 10/19/2007 2:48 AM (GMT 0)
Wow im amazed at all the comments! Now that i think of it my urgency got totally out of control once i started taking the Asacol. Im really freaked out right now cause i started bleeding today. I dont know what to do. Im afraid to take the Asacol. Any advice?
Posted 10/19/2007 12:39 PM (GMT 0)
Hey butterfly, betsaronie, et al, I don't have any immediate advise but I just wanted to add that at least I feel some solidarity knowing there are others out there who seem to get ghastly sick/worse on 5ASAs. It is frustrating because in their reports GI's will write things like "claims 5ASA drugs make him worse" or some such stuff, because they are so wedded to them and can't imagine it is anythign but an inability to "ride out" some initial symptoms. But the feelings I get are extreme pain and wretchedness in the gut from even the smallest doses.
Posted 10/19/2007 12:49 PM (GMT 0)
Sulfasalazine is horrible for me (increased d, bleeding, etc.) but Asacol doesn't seem to have a negative affect on me.  I actually found I got worse one time when I had run out of Asacol for a few days. 

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