Is mesalazine really completely useless for Crohn's disease?

And if it is, then how do I persuade a GI that it is? My question is prompted by beave's reply to marie's thread, and indeed I started replying to beave in it - but then I realised it was taking the subject away from marie's original post, so I'm making a new topic instead.

Beave, I wanted to know if you had any links for mesalazine/mesalamine (same thing, slightly different spelling) not being approved as a Crohn's treatment.

As far as I know, UK GIs still routinely prescribe mesalazine for Crohn's disease. As it so happens, I genuinely cannot even tolerate the stuff, but that is besides the point: even if I could tolerate it, I don't want to be taking a medication that is useless. I actually had a bit of a battle about this with my GI earlier on this year. He wanted to put me on mesalazine enemas; I said they were useless for Crohn's. He denied it, and I realised I had nothing to contradict him with. He also didn't think I would have any bad reaction to the enemas, despite my severe reaction to the oral meds in the past.

So I gave the enemas and supps a go. Well, the supps at least; when the supps caused bleeding I point blank refused to even try the enemas after that.

To be fair to my GI, he didn't make any bones about prescribing me alternative meds once I had refused the mesalazine ones. But that pissing around with rectal meds must have taken up a few months (I'm not going into waiting times for appointments, dealings with the IBD nurse before I even got to see my GI, and so on).

I half expect IBD nurses to be clueless, but my GI seems to be well educated in IBD; he goes to conferences and has printed me out studies occasionally. There seems to be a conflict between what he believes about mesalazine and what this board believes. My dilemma is that I don't know who to believe. It makes logical sense to me that mesalazine wouldn't be much good for Crohn's - it doesn't treat all the layers of the bowels - but I also can't understand why GIs are continuing to prescribe literally useless meds for a disease.

Enlighten me, Crohn's board.

Thanks scifigal. I've got to go out now (already late - story of my life :-/), so I'll check those when I get back. Have read that Crohn's forum thread before and it was pretty interesting, but not conclusive from what I can remember.

What I will do is check the NICE guidelines later on. I bet anything you like mesalazine will still be a recommended treatment for mild to moderate Crohn's disease, but we'll see.

Laters :p

Well it was for me. I thought it was doing something, but really it was just the rounds of prednisone easing the symptoms. While everything inside just got much worse. My GI feels it's worthless, and took me off of it rather quickly. Maybe if your Crohn's is VERY mild, maybe?

Good job everybody of answering for me! You make my life easier. ;-) Thanks!

For what it's worth, there has been debate about this at several of the conferences I attend. Several of the expert panelists say they never use it for Crohn's. A couple say they do use it, but only for the mildest cases they see. But then the others say if the cases are mild enough to get by with mesalamine-only treatment, then they are mild enough to get by with NO treatment too.

The studies referenced above are studies they've talked about. There are others too. As said above, early (poorly designed) studies showed a little benefit, but meta-analysis of multiple studies showed results similar to placebo.

If I have time I'll try to find some more studies.

One thing they have mentioned is that older studies of mesalamines in Crohn's relied heavily on CDAI scores but not on scope results or MRE results. And they've found that relying on CDAI scores alone isn't nearly reliable enough. You get pretty high good results for placebo and for mesalamines (basically anything you give a patient seems to help with their self-reported CDAI scores). But when you do scopes you see that placebo isn't helping, and mesalamines aren't either.

My doctor told me flat it out most often doesn't work for Crohns patients. For what it's worth. Since all anyone wants to tell me is that I should be the one telling my doctor what to do.

I've done a lot of reading as well and seen that it's generally not effective for Crohns. My guess is the reason it was prescribed for me is because my biopsies and bloodwork showed such slight inflammation and very specifically to the TI, and I have a visibly and otherwise healthy colon (as far as anyone can tell so far), no bleeding, little to no abdominal pain, that I think he thought that even though it doesn't treat all the layers of the colon, maybe a mild medication was the response for a mild case. And for me, the cost benefit analysis made it worth a try. Two months of this med while I'd otherwise be on nothing, didn't seem like such a horrible experiment.

I appreciate you starting a new thread. Very much. Wish I'd seen it sooner!

Thanks guys.

I read most of the links late last night, but unfortunately I am not at my scintillating best today. I made the mistake of watching Threads last night, the most depressing TV programme in existence. Couldn't sleep until it was light, so hardly got any sleep. Now I am developing a splitting headache. Almost feel like a nuclear bomb would solve my woes quite well now, tbh, provided I was directly underneath it.

I looked up the NICE guidelines, like I said I would (they're the guidelines which the NHS follows). For induction of remission, they recommended - in this order - glucocorticosteroids, budesonide and mesalazine. So basically, two types of steroids are recommended before mesalazine, which I wasn't expecting. 6MP/AZA is only recommended if there are two or more inflammatory episodes in a 12 month period or if steroids can't be tapered.

Not fantastic guidelines, imo, but what do I know....

In their "recommendations for research" section, NICE also had this to say about mesalazine:

The evidence for use of this group of drugs for maintenance of remission in Crohn's disease is not clear, and in particular, there is very limited reporting of disease site. It is therefore possible that this might be a cost‑effective treatment for maintenance of remission, with limited toxicity. Its use in this setting may therefore be associated with higher rates of successful maintenance of disease remission, reduced need for escalation of therapy, higher quality of life, and lower rates of hospital admissions and surgeries. The question is applicable to adults, young people and children, and trials in all are therefore required. A conventional glucocorticosteroid would be offered to induce remission in a first presentation of colonic Crohn's disease. Patients would be recruited once in remission and glucocorticosteroid‑free and randomised to receive mesalazine or placebo, for maintenance of remission. Co‑primary end points would be quality of life measures and maintenance of glucocorticosteroid‑free remission measured by the Crohn's Disease Activity Index (CDAI). Secondary end points would be mucosal healing at endoscopy, need for escalation of therapy to azathioprine or biological therapy, adverse events, hospitalisation and surgery. The time frame for follow‑up should be at least 12 months, but ideally 24–36 months.

That 'call for evidence' was made in 2012; no idea what, if anything, has come of it since then. But I'm not best pleased to see it's primarily relying on subjective quality of life measures and the crappy CDAI. I used to do CDAI tests online, just for my own curiosity, and my scores were so low I would appear as though I were in borderline remission. This during a time when every colonoscopy I had showed severe pancolitis, my inflammatory markers were always raised, and I was systemically ill (fevers, weight loss, anaemia). More recently, my hospital declared I was in remission on the basis of a low score on a different test (the Harvey Bradshaw Index). The cutoff point for remission is insanely high: you can have a lot of symptoms and still be considered in 'remission' according to these tests.

In a nutshell, I agree with everything beave said about the CDAI!

At any rate, if ever I join a new hospital for my Crohn's, then I want to make it very plain to the new GI that I will not take mesalazine, and why. I don't think I'm even going to mention mesalazine intolerance; I'm just going to say it's useless for Crohn's. If they say it isn't, they'd better be prepared to give me some blisteringly strong evidence that it isn't. I'll also bookmark this thread so's I can find it again easily in the future.

From the way I'm reading the NICE guidelines that you posted, you first need to be in remission before introducing the mesalamines. You are not in remission, so those guidelines should not apply to you. Furthermore, if you have already had a bad reaction to mesalamines, then you shouldn't have to take them. Thirdly, I'd hardly consider your Crohn's to have followed a mild disease progression. From the way I read it, none of those guidelines really apply to your situation, and that's what I think you should say at your next visit.

My case is a much better example of "mild" Crohn's. I was diagnosed in 2007, but they have no idea how long I really had it and I've stayed in remission with no meds after surgery. And even with me, the current thinking is that no meds at all is preferable over mesalamines. I think you might like to bring an article or two and write down your thoughts/requests, because you get anxious when you see the doc and it will help you stay on track.