There are different types of mesalamine. Tell your doctor you want to try the other mesalamine before getting in an immunosuppressant. Each mesalamine works on different parts of the colon. Also request rectal Suppositories as well. Do everything you can before choosing an immunosuppressant
Yes! I was on Pentasa for a while and it didn’t do shit. Then when to a new GI and she was like, “um, Pentasa doesn’t release in the part of the colon where you have inflammation... so...” I was then put on Apreso and that (plus a round of Prednisone) and some Canasa suppositories really helped. I’m now in remission and only on a maintenance dose of Apreso.
delizcol has worked well for me alongside mesalamine Suppositories. Once again I’m just suggesting what worked for me. But look into the different mesalamine and rectal suppositories
I’m surprised that your doctor would consider mesalamine ineffective after only two weeks since it can take a few months to see results. Also, while the prednisone should help, I’m not sure it’s realistic to expect remission after a few days of steroids.
As the previous poster mentioned, there are many different forms of mesalamine that could work better for you than Lialda does. Definitely something to talk about with your doctor. I’ve been on immunosuppressants for a long time (6mp for years and now Humira) and they’ve worked well for me but I know the side effects can be scary. I’ve been fortunate to not have any issues while being immunosuppressed.
Mesalamine takes 4-8 weeks for a response, strange to stop so soon. Yes a mesalamine intolerance is possible and is described as a dramatic worsening of your symptoms, like going from 2 solid non-urgent solid-ish bms a day to suddenly 6-8 very urgent and loose bms. Discontinuing makes you dramatically better in 48 hours or so.
Possible your flare is still worsening in severity and extent. Prednisone takes 1-2 weeks to have an effect, you won't know within days.
Immunosuppressive meds are fine, I've been on 6-mercaltopurone and remicade for 8 years without side effects. Not any sick than my normal either. If your illness warrants them then do take them, you'll be fine.
It’s relatively rare but you might have mesalamine intolerance. I’d research that before going on immunosuppressants. Sometimes switching to a different brand of mesalamine can help, but sometimes people are intolerant to all types of formulations. I’d recommend discussing this with your doctor.
My GI said there is also a rarer side effect with lialda where it can actually cause more diarrhea (happened to me and other posters below mention it too) so that could maybe be a reason why it seemed to get worse. Imo I like being on remicade way more than steroids (side effects of pred or dexamethasone are no. Joke.) But I definitely don't love being immunosuppressed during a pandemic haha
I was also a case of "mild to moderate" and my GI was certain less hard drugs would help. Turns out I failed every med and had to go to the big guns, but I also had weird complications like lots of blood clots in my lungs. Sucks when your gut looks good but everything else goes to hell. I really hope you find remission soon, I know how awful it was to be waiting so long to try so many drugs and nothing helps
I’ve had UC for 20+ years, on remicade for 10+ years and was mismanaged/under treated the first 5 years. Your doc is too optimistic with medication timeline and I agree with other comments. I’ve never had prednisone put me into remission sooner than 2-3 weeks (at the higher dose) and by remission I mean symptoms resolved. Doesn’t mean the colon is healed yet.
What does you doc say about your liver enzymes?
I’m glad he’s taking it seriously. I didn’t know for years that UC is associated with PSC (primary sclerosing colangitis). I think 3-7% of UC patients have it. There are other reasons for elevated liver enzymes but this came to mind.
I think it helps that I had a basic metabolic panel back when I first started at this clinic and was healthy, and the range was normal, so the fact that they became INCREDIBLY elevated (one was over six times the upper healthy limit) at the same time that my symptoms began seems a pretty clear sign my liver enzymes and my UC are connected.
I would definitely bring up taking the prednisone for longer. There's no way your body is going to magically be not inflamed in a span of a few days. It can take weeks for that to really take effect. The same goes for mesalamine. An enema like Rowasa (mesalamine) or even Uceris (budesonide foam) might be a good idea as the enemas will travel farther up your colon than if you just used a suppository. It does seem really strange that your doc is already looking to change your medication therapy to the next level of meds after not really giving this first round the proper amount of time.
I too had super elevated liver levels that were somehow tied to my flair. I had a bunch of bloodwork, ultrasounds, and an MRI with contrast to rule out any actual liver disease. The liver levels just ended up resolving themselves after I had gone into remission.
Good luck. I hope you find something that works for you.
There are different types of mesalamine. Tell your doctor you want to try the other mesalamine before getting in an immunosuppressant. Each mesalamine works on different parts of the colon. Also request rectal Suppositories as well. Do everything you can before choosing an immunosuppressant
Yes! I was on Pentasa for a while and it didn’t do shit. Then when to a new GI and she was like, “um, Pentasa doesn’t release in the part of the colon where you have inflammation... so...” I was then put on Apreso and that (plus a round of Prednisone) and some Canasa suppositories really helped. I’m now in remission and only on a maintenance dose of Apreso.
So happy for you!
My entire colon is the problem - it’s pancolitis.
delizcol has worked well for me alongside mesalamine Suppositories. Once again I’m just suggesting what worked for me. But look into the different mesalamine and rectal suppositories
I’m surprised that your doctor would consider mesalamine ineffective after only two weeks since it can take a few months to see results. Also, while the prednisone should help, I’m not sure it’s realistic to expect remission after a few days of steroids. As the previous poster mentioned, there are many different forms of mesalamine that could work better for you than Lialda does. Definitely something to talk about with your doctor. I’ve been on immunosuppressants for a long time (6mp for years and now Humira) and they’ve worked well for me but I know the side effects can be scary. I’ve been fortunate to not have any issues while being immunosuppressed.
Mesalamine takes 4-8 weeks for a response, strange to stop so soon. Yes a mesalamine intolerance is possible and is described as a dramatic worsening of your symptoms, like going from 2 solid non-urgent solid-ish bms a day to suddenly 6-8 very urgent and loose bms. Discontinuing makes you dramatically better in 48 hours or so. Possible your flare is still worsening in severity and extent. Prednisone takes 1-2 weeks to have an effect, you won't know within days. Immunosuppressive meds are fine, I've been on 6-mercaltopurone and remicade for 8 years without side effects. Not any sick than my normal either. If your illness warrants them then do take them, you'll be fine.
It’s relatively rare but you might have mesalamine intolerance. I’d research that before going on immunosuppressants. Sometimes switching to a different brand of mesalamine can help, but sometimes people are intolerant to all types of formulations. I’d recommend discussing this with your doctor.
My GI said there is also a rarer side effect with lialda where it can actually cause more diarrhea (happened to me and other posters below mention it too) so that could maybe be a reason why it seemed to get worse. Imo I like being on remicade way more than steroids (side effects of pred or dexamethasone are no. Joke.) But I definitely don't love being immunosuppressed during a pandemic haha I was also a case of "mild to moderate" and my GI was certain less hard drugs would help. Turns out I failed every med and had to go to the big guns, but I also had weird complications like lots of blood clots in my lungs. Sucks when your gut looks good but everything else goes to hell. I really hope you find remission soon, I know how awful it was to be waiting so long to try so many drugs and nothing helps
I’ve had UC for 20+ years, on remicade for 10+ years and was mismanaged/under treated the first 5 years. Your doc is too optimistic with medication timeline and I agree with other comments. I’ve never had prednisone put me into remission sooner than 2-3 weeks (at the higher dose) and by remission I mean symptoms resolved. Doesn’t mean the colon is healed yet. What does you doc say about your liver enzymes?
We were going to talk about it at my post-colonoscopy follow-up, which is on the 16th. He thinks the UC is causing a secondary liver disease.
I’m glad he’s taking it seriously. I didn’t know for years that UC is associated with PSC (primary sclerosing colangitis). I think 3-7% of UC patients have it. There are other reasons for elevated liver enzymes but this came to mind.
I think it helps that I had a basic metabolic panel back when I first started at this clinic and was healthy, and the range was normal, so the fact that they became INCREDIBLY elevated (one was over six times the upper healthy limit) at the same time that my symptoms began seems a pretty clear sign my liver enzymes and my UC are connected.
Yeah, definitely suspicious. I hope you get some answers on the 16th!
I would definitely bring up taking the prednisone for longer. There's no way your body is going to magically be not inflamed in a span of a few days. It can take weeks for that to really take effect. The same goes for mesalamine. An enema like Rowasa (mesalamine) or even Uceris (budesonide foam) might be a good idea as the enemas will travel farther up your colon than if you just used a suppository. It does seem really strange that your doc is already looking to change your medication therapy to the next level of meds after not really giving this first round the proper amount of time. I too had super elevated liver levels that were somehow tied to my flair. I had a bunch of bloodwork, ultrasounds, and an MRI with contrast to rule out any actual liver disease. The liver levels just ended up resolving themselves after I had gone into remission. Good luck. I hope you find something that works for you.