Asacol causing more harm than good? Wanting to switch meds

Posted , 5 users are following.

Hi everyone,

I am female, 22 years old and have been diagosed with UC this March. Since I have been diagosed, I am using Asacol 800MG, 3 tablets a day. I am also using suppositories now, from every day to twice a week. 

The asacol has been great with controlling bleeding, and frequency of BMs, but I have been noticing some other side effects that I believe it is causing. I have been getting a pain in the middle of my chest every now and then (I think its heartburn?). I find I don't have an appetite like I used to, I find myself living off toast and ginger or peppermint tea to calm my stomach, and I use a heating pad too. But I also find that while taking this medication, I have lots of flutence and trapped gas/gas pains. I eat relatively low residue, safe foods, nothing that would cause flutence.

I am thinking of switching medications, would anyone have any advice for me? I am wondering if these symptoms are just part of the disease, or if it is the medication. Any advice would be helpful. Thank you! <3>

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  • Posted

    I was prescribed Asacol suppositories last year and suffered terrible side effects. After taking the first one at night, the following day I felt absolutely terrible. I had the most horrific headache and felt sick. I can only describe it as the worst hangover I've experienced. Without any of the fun! The effects wore off during the day so I decided to give it another go, the benefit of the doubt. Suffice to say I felt exactly the same the next day. I refused to take any further treatment as the side effects were far worse than the illness. However, just the 2 suppositories actually stopped the bleeding etc for a few weeks. I just couldn't stand the price I was having to pay. It seems that the treatment for this illness can be as bad to live with as the illness itself.

    I would go back to your Dr or consultant and ask to try something else. What works for one doesn't necessarily work for another. It's trial and error I'm afraid. Good luck, I hope you find something suitable and successful soon. X

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    • Posted

      Hi louisep,

      Thank you for the advice, I am going to see my gastroenterologist in a few weeks to discuss some other treatment options.

       I agree with you, I feel like the side effects can be as bad as the disease.If I may ask are you taking anything right now?

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  • Posted

    Hi leanne. i was tried on various aminosalicylates since diagnosed 4yrs ago roughly. started on sulphasalazine-no good, then pentasa- ok for a while but only about 65% controlled, then ipocol because it worked for my mum, but didnt work for me, & last 12mths balsalazide which is much better & with no side effects for me. i am currently having a mild flare following a stomach bug a few weeks ago & back on my max dose last 10 days to try & stay on top of it, but otherwise this med has well controlled it since may this year. with colitis, i think you have to expect the odd blip, but this is the mildest flare ive had since diagnosis. i was told the longer you have it the flares tend to get milder by my gp & an occ health doctor. balsalazide is one of the newer aminosalicylates my gastro consultant told me & carries less side effects than some of the older ones. my mum was on asacol to begin with & she used to find them unbroken up in her stools, so keep an eye on your stools in case they are going through you & not working properly. trouble is with meds what works for some people might not work for another so it is a bit of a path of try one for 3 or 4mths & give it a fair chance see how you get on., but i have found the balsalazide to be the best overall for me. when i have had a bad flare prednisolone oral tablets were my lifesaver in calming it down & then maintaining again with balsalazide. i was also diagnosed with bam(bile acid malabsorption) which i am now treated for with meds, but this was also hindering flares as it causes chronic diarrea & stomach pain & rectal sorness. hope this helps xx
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    • Posted

      Hi looloo43,

      Thank you for your reply.Sounds like you've tried many various amniosalicylates. Do you just take the prednisolone every now and then and take the balsalazide regularly? I am going to meet with my gastroenterologist in a few weeks and I will definately ask him about balsalazide. Thank you!!

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    • Posted

      Hi leanne, yes prednisolone oral tablets only when having a moderate to bad flare to calm it all down again. thankfully have not had to have these since earlier this year. no bad side effects for me really on prednisolone they made my face swell a little but this goes down when you stop. made my skin super smooth & didnt need to exfoliate while on them!! i take the balsalaside every day currently on 6 x 750mg capsules (3 in morning, 3 after dinner in evening) as i am having mild flare at the moment & want to stay on top of it(6 is the max dose). i was getting by on 4 to 5 a day, but following a stomach bug 3wks ago its triggered off mild flare, so upped my dose. i also take a liquid probiotic which when i'm not flaring helps to make my ibs-d milder. it seems to make everything a bit more stable & ibs cramps & bloating lessened. obviously its not a med so it wont make you better, but it assists with ongoing symptoms. ask your gastro doc about it too. hope this helps xx

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  • Posted

    I have been on and off Asacol over the last 4 years due to side effects I believe caused by it. I'm now on Mezavant for the second time but quite frankly it isn't any different. I have lots of horrendous side effects which I believe is the result. I'm staying on the Mez at moment as I only have to take it in the morning rather than twice in the day and I'm also having a break from flare up at moment and prefer not to rock the boat I think no matter what med you take, the side effects are more or less the same!
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    • Posted

      Hi ruari1,

      I completely agree with you. I feel like there is always going to be side effects with the medications, its just deciding which good outways the bad. I hope you find something that works for you!

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