Mesalamine no longer working?

It seems mesalamine no longer works for me... has this happened to anyone else? It seems to have worked so well for me up until a couple of months ago.
I was diagnosed in 2019 with UC in the rectum and sigmoid colon. Started taking 4 Lialda a day. After a flare up I continued with the the pills and added a nightly mesalamine enema. Had a bad flare up and hydrocortisone enemas got it under control and I was fine for probably 6 months. Another flare up, I did mesalamine enemas twice a day for a month and my symptoms disappeared completely. Another flare up, twice a day enemas had no effect. Hydrocortisone enemas got it under control but when I tapered off symptoms returned. I did another round of hydrocortisone enemas, tapering off now and almost in a full blown flare again.

I have a doctors appointment in a little over a week. But has this happened to anyone else? Mesalamine worked very well but then stops? My doctor doesn’t think my UC has spread further up the colon since hydrocortisone enemas work very well but wants to do a scope soon to find out what’s going on.

If mesalamine just stopped working for you, what did you go to next? I’m terrified of most medications.

Do you have hemorrhoids, possibly? What symptoms are you having? Could making changes in diet also help? I am having some intermittent bleeding and I am only on mesalamine oral and rectal meds. Would like to keep it that way too. I recently added a probiotic which seems to be helping but I also have hemorrhoids. So, trying to figure out if my symptoms are due to that or inflammation. I also eat a pretty clean diet (eg no gluten, dairy, sugar), but I know diet doesn’t impact the condition for everyone. I know it makes a big difference for me. Have had good results with mesalamine for the past 5 years.

It worked for me for a good 6 years. Then for another 5 years with a course or two of pred per year. Now I am steroid-dependent most of the past 3 years. But I think my enemas still help some because my rectum has twice had an inflammation-free area during recent scopes. So, I think it's still probably helping some, but I'm not sure. I am sorry if it is no longer working for you. That is a huge bummer. Maybe you can still be okay on mesalamine but just take a course of prednisone? That worked for me for years. Of course, you don't want to be on pred too often. After that, the next med choice would most likely be something like Remicade. I avoided biologics until I had no other choice. They haven't worked for me, but they seem to work for a lot of people. I agree, they're scary. But unfortunately, we don't have a lot of options with this horrible disease.

Have you tried Uceris/budesonide (oral)? It doesn't give all the bad side effects like prednisone and is much milder since most is just absorbed in the colon. You might consider it or ask your doctor. I don't think you're doing anything wrong with the tapers. It just happens sometimes. Our disease gets worse or meds stop working. I hope you find something that will work. Sucks being sick.

I’ve never tried Uceris before. Ive heard of it but my doctor has never prescribed it. Definitely something I’ll ask about!

After this last round of steroid enemas is the first time I’ve added the mesalamine ones in while tapering. Its definitely helped more than the round before this, but I’m still having symptoms again. Ugh

Flowersgal: that’s the side effect I’m worried about, the moonface and the weight gain. I’ve always had some issues with sleep so I could take that one I think.

Have you tried monitoring your diet for food that might trigger flares? Unfortunately many members like imagardener2 who have remained in remission for years eventually stop posting here. But she said that meds, except for mesalamine enemas, did nothing for her symptoms until she went gluten-free.

Some UCers take azathioprine (oral) in addition to mesalamine; that or 6-MP (oral) were the "moving-up" immuno-suppressant meds prior to advent of biologics. It's not that unusual for mesalamine to stop working, nor for 1 type of mesalamine to work when others fail. If your inflammation is still limited to proctosigmoiditis, you could try brandname Colazal (capsules), which is formulated to treat left-sided UC primarily. (Its generic, Balsalazide disodium, usually gets dispensed by the cheapest made in Roxanne Labs so I wouldn't recommend starting that unless one 1st tries brandname: pricey but definitely worthwhile in my experience.) If you have major cramping with flares then it makes sense to get a c-scope update, in case your UC has expanded upward or to pancolitis. It's not a good plan of treatment to use Prednisone repeatedly or longterm due to side effects that are known to harm bones & joints, cause cataracts, etc. over time. Be sure to get adequate calcium, vit D, & zinc by supplementation if your lab work shows deficiencies. Also, try to alleviate stress by taking up yoga or other moderate exercise. You can start with simple stretches and gradually advance when your UC calms down. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Oldhat: thank you for all that info! I’ve never heard of Colazal so I’ll definitely research and ask about it at my appointment.
I take vitamin D and iron right now since I was low on those at my last check. Vitamin D is easy to take... iron is tough but I’m trying haha

Food doesn't impact my UC either. It's definitely not "easy peasy" for most of us. 🙄

"A full blown flare for me is stomach cramping with blood and mucus. I have normal bowel movements with blood at the end of them and then throughout the day I will have a few trips to the bathroom with only blood and mucus."

This is my situation exactly. Mesalamine enemas helped for my first flare close to my rectum. My second flare is in my sigmoid colon and Mesalamine orals are not working. Steroids are not working.

I notice your post is from 2021, how are you doing now?

Thank you . I will mention this to my doctor.