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Stopping Mesalamine

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Ulcerative Colitis
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Posted 6/6/2023 6:39 PM (GMT 0)
I've been taking Salofalk mesalamine granules and Salofalk suppositories for 7 years consistently. I have never stopped taking my medication, maybe 1 day max that I would forget or was traveling/unable to access my medication. I think I was mostly fine from 2016-2021. Last year bleeding came back a little bit (my only symptom) and my doctor increased my rectal medication. However I still see some blood in my stool and we even tried increasing my dose of Mesalamine granules.

Last week I wasn't able to take my medication for 2.5 days straight (nor orally or rectally) which I would say is the most I've gone without taking any mesalamine in the past few years and, to my surprise, my stool was blood-free on the third day. I don't think it makes sense, does it? I am trying to stop my medication to see what happens, so I am on my sixth day without any mesalamine and I would say my stool looks better (form/shape, less blood).

Has anyone done this in the past? If so, what were the results? Am I still doing okay because it hasn't been long enough and the mesalamine is still doing some work? Should I expect my symptoms to get worse in the next weeks if I keep off my medication?

Thank you
Posted 6/6/2023 7:09 PM (GMT 0)
I know some people are sensitive/allergic reactions to mesalamine but I can’t speak to that.

I can say, because I’ve seen it often enough from postings here, that if you stop your medication, you will flare sooner or later. UC is a lifetime disease with no cure. Only treatments. It’s not unlike diabetes in that way, so it would be like a diabetic trying to stop insulin. It’s not going to work.

I caution you to not stop medications completely. If you want to switch to something else, that’s different. I’ve seen too many cases of posters saying they were feeling great so wanted to see if they could stop their medication and then coming back to report they were in an awful flare and in the hospital and their previous medication was no longer working.
Posted 6/6/2023 7:57 PM (GMT 0)
@FlowersGal that makes sense. I am not trying to stop my medication because I feel good though. In fact that's why I haven't stopped taking them in so many years. I just thought it was a strange coincidence that my stool looked better once I stopped taking my medication for a couple of days. You are probably right though.
Posted 6/6/2023 8:54 PM (GMT 0)
I'm not sure but I do know it took several days or maybe a week for symptoms to show up for me when I stopped my mesalamine under my doctor's advice. I do feel like mesalamine makes my stools mushier. The blood part doesn't make much sense, but you can't judge much off of just a day or two since sometimes our symptoms ebb and flow.
Posted 6/6/2023 9:39 PM (GMT 0)
Since bleeding sounds like the only symptom you are having it might be a good idea to have a colonoscopy to see what is going on.
Posted 6/6/2023 9:45 PM (GMT 0)
The one and only time I stopped mesalazine- while taking other drugs which were supposedly controlling my inflammation- I flared horribly 7 weeks later.

I do not recommend stopping. If you stop and you flare, you may end up needing stronger medication to get it under control.

In my opinion it's not worth the risk.
Posted 6/7/2023 4:26 PM (GMT 0)
You need a c-scope to see what's actualy going on. Its possible you have a hemorrhoid that's irritated by inserting the suppository.

When was your last scope?

q
Posted 6/8/2023 7:47 PM (GMT 0)
Same as poopydoop, I stopped mesalamine after starting a new drug that seemed to be working. 5 days later I either flared or had food poisoning, but doc seemed to think it was a flare. I had to do short 1 week course of prednisone and re-started mesalamine.

More recently I've found that I still need mesalamine while on Xeljanz.
Posted 6/8/2023 9:44 PM (GMT 0)
I also had symptoms return after stopping mesalamine while on Xeljanz. My doctor told me to stop it. Things went back to normal after I restarted it.
Posted 6/9/2023 10:51 PM (GMT 0)
I still need mesalazine on xeljanz- oral and rectal. But I take the 5mg dose. When i was on 10mg I didn't need the enemas.
Posted 6/11/2023 4:46 PM (GMT 0)
Thanks everyone for the replies. I completed 1 week off mesalamine on Wednesday and decided to resume it. My stool was looking more solid, however I did not get rid of the slight blood traces, so definitely not worth risking it.

@Sara14 thanks, seems like mesalamine makes my stool mushier as well.

@quincy @CCinPA I had a colonoscopy a month ago. Biopsy said I had "moderate inflammation", doctor said my symptoms do not really match test results, even prior to the colonoscopy, as he said I should have worse symptoms for this level of inflammation. He said we should try increasing the medication before trying switching to biologics.

@poopydoop @madampoopsalot thanks for sharing your experience.
Posted 6/11/2023 6:24 PM (GMT 0)
JoshDun, may I ask, what country are you in? I was on Salofalk granules for years while working as an Expat overseas, but now back in America, no one has heard of them and they seem to be unavailable here.

Can I assume you're not in America?

Thanks,
DeWayne
Posted 6/11/2023 6:53 PM (GMT 0)
@sonvolt Since 2019 I have been alternating between Peru and the US. I still get treated in Peru for the same reason (Salofalk not being available in the US). So I just bring 3-4 month supplies whenever I come back to the US. When I was first moving here I found out some people manage to bring Salofalk from Canada. Not sure if it is still available that way tho.
Posted 6/12/2023 3:00 PM (GMT 0)
Thank you, that makes sense.
Posted 6/21/2023 11:15 PM (GMT 0)
I have stopped taking mesalamine after 20 years. I really wanted to take a break after all that time and I've had no problems. I started a biologic that replaced mesalamine, imuran, prednisone and rowasa. I am very happy to have those drugs out of my system, my blood work has never looked better. Very grateful for these new meds.
Posted 6/22/2023 3:28 AM (GMT 0)
I’m in a similar situation and did not want to open a new thread. I’m on Rinvoq 30mg and still having lots of mucus and urgency and frequency. Been taking Rinvoq for several months now. After first few weeks my Dr. Said to stop oral mesalamine. Now that i’m still struggling is there any contraindication to taking mesalamine while on Rinvoq?
Posted 6/22/2023 8:20 AM (GMT 0)
No contraindications smile I take mesalazine with xeljanz and have done for 4.5 years
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