alternative rectal meds to mesalamine

Hi everyone,

I used to be a pretty regular member here but upon achieving clinical remission 2 years ago, I haven't stopped by/checked in as much. It was nice to almost "forget" about my UC for awhile, but I certainly didn't forget about all of you and your amazing support and deep wealth of knowledge!

I have pancolitis, diagnosed first as proctitis in 2013 then advanced to pancolitis after severe flare in 2016. My usual maintenance drugs are Simponi 100mg every 4 weeks and 6mp 50 mg daily.

So the question that brings me back here involves a possible mesalamine intolerance. During my last flare, I found I couldn't tolerate mesalamine enemas. Made my bleeding and diarrhea significantly worse. I tried using them for a few days and then stopped for a few days and then using them again and noticed significant difference. Then last spring I started developing a malar rash, fevers, and joint paint. My GI first sent me to a derm and then to a rheumatology specialized in Lupus. Lupus was thankfully ruled out and both drs agreed it was probably an intolerance to my mesalamine (was taking oral Lialda for years as part of maintenance). They switched me to sulfasalazine instead, but a similar reaction occurred and I had a sudden and drastic drop in my WBC. I was eventually taken off 5ASAs entirely - all the systemic issues I was experience stopped and I didn't notice any changes in UC remission. I'm guessing Lialda was probably not even needed to maintain remission. I graduated past 5 asas a long time ago.

I am currently in a significant flare - my first in over 2 years. 15-20 BMs a day with no formation, urgency, and significant bleeding. (I once bled so much during a flare I had to be hospitalized for blood loss, so I'm not an over dramatizer with blood. Takes a decent amount to worry me).

I reached out to my GI right away as I'm 22 weeks pregnant and didn't want to mess around with a flare. My dr did a stool test and blood work to rule out the obvious other possibilities. Everything came back negative and blood work showed my inflammatory markers were off the charts indicating a significant flare. She wanted to try a course of budesonide before trying prednisone, so I started on that right away. I've had some success with budesonide in the past with treating mild flares, not sure how it'll go with this one. Been on it about a week and I would say there's been some progress in frequency and stool formation, but it's a slowwww improvement.

She also prescribed Canasa. My budesonide prescription was filled first, so I was able to take it for 3 days before starting Canasa. The bleeding was the first symptom I noticed any improvement in - almost entirely stopping after those 3 days. As soon as I started using Canasa, though, the bleeding picked steadily back up. The first few bowel movements after using the suppository are usually just blood. And then the more time that passes after using them the less blood I see.

Is it possible I have a mesalamine intolerance? I'm ALL about treating inflammation from both ends and definitely understand and agree with the value in enemas and suppositories, but I'm struggling to continue using them when they seem to be making things worse.

Those of you with mesalamine intolerance, does this sound like what I'm experiencing? Any suggestions of a non mesalamine based enema/suppository I could use? Or do I give up on rectal meds and rely on the big guns I'm on instead?

My diet is well maintained and I speak with a nutritionist regularly, so I know it'a not currently a food issue.

Post Edited (poopinallday) : 4/14/2020 6:55:40 AM (GMT-6)

Uceris (budesonide) has a foam that I really like. It reaches pretty far up too. I know because my dr said his sales rep did a “air” demo in the office and the foam flew across the room. I never tried that!

It can be quite expensive so if your insurance is an issue you might contact the manufacturer. I think they have both a copay and a “free” program that is income based. They used to anyway.

I’ve taken Metamucil for years because of my previous diverticular disease. But as I recall I did not take it during my flare. You could try stopping it for a few days and see how you do.

I have recently been prescribed rectal tacrolimus ointment. So I started to flare in Nov 2019 and my C-Scope showed just 3 cm of rectal inflammation. So my GI prescribed rectal tacrolimus ointment after I failed canasa and Uceris foam. The only hick up for some out there may be it has to be made at a compound pharmacy which thankfully the University of Minnesota has.

Anyway it worked within 2 weeks and I have been doing well since. Maybe an option for those who have distal (rectal only) inflammation.