Mesalamines and symptoms

Since I was diagnosed in November 2010, I've been on a mini-tour of mesalamines. First I was on Lialda (and prednisone). I felt like I was improving at the start but my doctor switched me to Asacol (it's been a long time so I can't remember the exact details of when/why.) Right after switching diarrhea came back and I thought it was related but my doctor insisted those kind of side effects are rare and that it's the disease making me sick, not the meds.

At some point I switched myself back to Lialda because I had that vague mistrust of Asacol and I could get Lialda cheaper with the discount card and take less pills a day. I don't remember the switch making a difference either way.

Then a couple months ago my doctor switched me again to Apriso.

Also a couple months ago my symptoms started getting significantly worse. First crampiness that is normal for me a starting couple weeks before my period (I only have one every three months with my bc) didn't go away afterwards. This happened while already taking Librax, and now Bentyl which doesn't seem to make much of a difference either.

Inconsequential pain has turned into severe pain. "Regular" (?) diarrhea has become mostly liquid. No blood or blood that was obviously from hemorrhoids (bright red, on the tp, only after solid poop) has become traces of blood in the toilet, with the liquid d. (This doesn't sound like much compared to what some other people have, but it is comparing to myself - I never really had blood as a symptom.)

Old "rules" like never having two 'bad' days in a row, and not being woken up at night, have been thrown out the window. Overall I'm doing worse than I was before I was diagnosed, on any meds. I actually miss those days when I knew mornings would probably be bad but evenings were always fine.

I think the downslide started around the same time I started Apriso but I assumed it was coincidence. Now I'm questioning it again, especially when side effects list things like Worsening of ulcerative colitis symptoms .

How do you tell the difference between mesalamine intolerance and it just not working?? I'm pretty sure if I mention this to my doctor she's just going to say the same thing - my UC is making me sick, not the meds, wait for the Remicade to kick in...

How much could it hurt to just stop taking it for a week or two to see what happens?

When I started Asacol, I was in a really bad flare up and I got better in a week or two so I knew the medication had helped. A year or so later, I flared up while on Asacol and it didn't seem to matter if I switched to Lialda or Colazal, or increased the dose, none of these medciations were going to get me into remission.

It sounds like your case is pretty mild. Have you tried increasing the dose of Lialda? or using enemas? Have you tried restricting your diet? Probiotics?

Sorry, I thought you were saying that it was pretty mild because you said it doesn't get you up in the night and that your symptoms aren't too bad after the morning. I don't think stopping the mesalamine is a bad idea temporarily to see how you're feeling. It is completely possible that you're not able to tolerate it. By rectals I didn't necessarily mean mesalamine, you could try steroid foam. I've heard of people taking higher doses of Apriso than 4 a day but it doesn't sound like more would help, it may even be harming. It's frustratiing that your GI isn't willing to listen to what your feeling.

If I'm reading properly it sounds like your UC is not responding to whatever meds you've tried and is getting worse. That happened to me (although not trying all the mesalamines you have). So the usual next step is 6mp or similar or Remicade or Humira.

This is the discussion you have to have with your GI. You need to tell him/her that your meds aren't working and decide with him/her what you want your next med to be. Knowing what your choices are and researching them in advance makes you part of the decision process.

Should you stop meds for a week or two? Your decision. If you see improvement then you know you are intolerant of mesalamines or at least of the one you're taking. But if you have bad symptoms you won't know whether it's the UC or the meds. Rock meet hard place.

Your siggy doesn't say you are taking Remicade so why should it "kick in"? I'm confused.
Sorry for your stress, I've been there, we all have.

Sorry if I have asked this, when was your last scope and what did it show?

You can call and get the record from the scope if you think it would be helpful. I have been told my symptoms may be attributed to IBS as well. I will have mild appearing inflammation but terrible symptoms. Don't give up, you will get things under control. Have you ever tried 6mp or did you go straight to Remicade? Has your GI mentioned Colazal? Some do better on Colazal, it is formulated differently. It didn't work well for me unfortunately, it gave me increased BMs and looseness.

I definitely think you should try steroid enemas if there is active inflammation in your rectum.

Well I had my second Remicade infusion today... still no better, no worse...

Oh and to answer your question I missed - I was on Imuran for a while but ended up in the ER with what I thought was horrible prednisone withdrawal (extreme dizziness, fatigue, etc) but they told me was probably a buildup of the Imuran. My doctor didn't agree but when I took it again I had the exact same issues so I've been off since.

It would be nice if you could just use Remicade and not have to worry about all of the other stuff but I know it's never so simple. I am trying to taper off Asacol because I am not convinced it is doing anything for me but I have had so many ups and downs, I am scared to taper it right now. It's a long road to figuring out what works for you.

Did your GI mention any treatment options for the IBS? Have you ever tried VSL#3? How about steroid enemas? I've read that some antidepressants can help slow the bowels and help IBS. Ask your GI or GP if you're interested.

Yes, she told me to take lomotil every day to "slow things down". That turned out to be a horrible idea - it didn't make the diarrhea stop but instead happen in excruciating slow motion. I'm not discounting that IBS exists, but it feels like a lazy throwaway diagnosis when there could be an actual underlying cause.

I've thought about getting a second opinion but since she seems to have me following the standard path I haven't bothered.

She does have me on a low dose of an antidepresant. I don't know that it's doing anything but it's not causing any problems at least.

VSL #3, I'm interested but the cost... I wish there was a way to know it would work ahead of time! I'm losing faith in supplements but when I finish the box of probiotics I have on hand (I think I killed them with the heat in my apartment but I don't want to waste) I'm going to try some of the fancy refrigerated ones Whole Foods sells.

Steroid enemas - do those have any of the issues of oral steroids? If I can prove that mesalamine is causing me problems I might ask for that.