Mesalamine Intolerance- My Story

I've posted here a few times over the past month, and wanted to give an update on what has been happening.

Quick background. I had a scope done after a mild flare, that seemed to go away once my stress was gone, and my biopsies showed mild UC throughout my colon. I was put on Apriso the day after my scope, and didn't experience any symptoms until exactly a week after I started Apriso.

The 'flare' started July 4th, and I started prednisone 3 days later. The pred helped the first 2 days, and then I got worse and worse. I upped the pred dose to no avail. about 2 weeks in, I asked my GI at the time if I could stop the Apriso because I think it was making me worse. They said 'We don't change medicines until you've had a follow up appointment.' I couldn't get a follow up appointment for 6 weeks after my scope. During the 'flare', I also tried mesalamine enemas and I got worse.

By the 4th week, I was ready to spend time in the hospital. I had lost 27 lbs when it was all said and done, and wasn't going to make it until Aug 14. I got in to see a different GI this past Monday, and he told me to immediately stop the Apriso. Monday was my last day on Apriso. By Tuesday night, I saw significant improvement and I have improved every day. I am not where I need to be strenth wise, but it looks like I'm headed in the right direction. It is such a shame that you have to be your own doctor with this most of the time. Of course, being fresh off a diagnosis at the time I was getting worse, I wanted to listen to their instructions.

Anyways, it sucks that mesalamine is not an option for me anymore, but I feel like I am getting my life back, albeit I know it will take some time. I started Balsalazide yesterday for maintenance. I won't feel completely normal until I know I can tolerate it for long periods.

I read somewhere that mesalamine intolerance is kind of rare, but hopefully my personal story can shed light on the fact it is very real. I will continue to pray that all of you who are going through way worse times than me can get some relief very soon. Thank you for taking the time to read my story.

So sorry to hear about your troubles. Mesalazine is promoted as the safest UC drug. It definitely destroys your body much less than the stronger stuff, but I've heard what feels like hundreds of cases of intolerance to it, far more than any other med. For me Mesalazine made fluid fill my lungs which was the most painful thing I've ever experienced


At least you know what was going wrong and now you can begin on something that will work.

I have a similar story. Mild flaring symptoms for years until my first colonoscopy revealed that I have UC. Took Colasol and immediately got worse within a day or two. “Gee what a coincidence, I got the flu and pleurisy at the same time I started meds”. Ha ha.

Then after waiting a few weeks the same problem when starting up with the Colasol again. Believe it or not I tried again for the 3rd time with the same results. Of course my GI was pissed that I wouldn't take prescribed Colasol, later Asacol, and finally pred.

My question is the same as Art's, wouldn't the 5-ASAs in Colasol cause you problems? But perhaps because Rowasa is local rather than systemic you may not have the same problem with the mesalamine enema. Maybe. But I really don't need much of an excuse NOT to try the enemas (yeech!) to see if they too cause problems.

You need to find your own path. For me I find that psyllium seed and probiotics in conjunction with monitoring my diet with a food diary seem to keep flares away.

To IamCurious- I did try the enemas earlier. I wasn't having any blood leading up to that point and the blood came back like no other. I stopped the enemas and blood hasn't returned.

Here I thought the new GI I saw knew what was going on. Learning every day that you have to be your own doctor sometimes, and they are only there for guidance and suggestions.

I seemed to develop intolerance to mesalamine after years of having taken it. During those first few years it definitely helped me. I've been battling a flare for the last 18 months or so and about 4 months ago I tried a mesalamine enema which was TERRIBLE. I had awful flu-like symptoms and a lot more bowel movements and bleeding the next day. Needless to say I didn't take another one.

It took a few months before I was able to see my doctor and ask if Lialda might be hurting me given my reaction to the mesalamine enema. He agreed I could stop it and even mentioned that symptoms of mesalamine intolerance can look like a colitis flare.

Lo and behold I started to improve soon after stopping Lialda with nothing else to explain the improvement. Within a few weeks I was greatly improved. I even tried to tell my doctor I don't need the Humira he was about to prescribe me, but he wasn't OK with me not having any maintenance med and he's pushing me to do Humira. I am hesitant about that since my body rejected mesalamine and also recently Imuran (a story for another post). But he's probably right, I do need a maintenance med, because although Lialda made me worse, it wasn't the original cause of my colitis.