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Asacol stopped working??

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Ulcerative Colitis
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Posted 7/21/2019 11:20 AM (GMT -6)
Hello everyone and can I start by saying how much, over the years, this forum has helped me to cope with my UC which I have had since I was 34 and has been going on for 20 years. Thank you all. Have now taken the plunge to join you!
I am pretty healthy and am lucky enough to have quite long remissions. After a major flare and hospitalisation 5 years ago I was prescribed Asacol. 8 per day, tapering over 5 months to one per day got me over it. I now take one Asacol tablet per day with foam enemas when needed. I have the odd flare but the Asacol sorts it. However, I recently flared and have gone back to the 8 asacol per day and although there is some improvement I am not seeing the quick response I used to experience when upping my dose. I am really scared that it might have stopped working as I really dread the steroids that my GP will doubtless tell me to try. How long have other fellow Asacol users waited before seeing an improvement (e.g. diarrhoea stopping, less blood, etc.)? Thank you all so much.
Posted 7/22/2019 8:04 AM (GMT -6)
Always happy to give a long time lurker, a long-deserved welcome! Sorry to hear you are flaring though.

As much as you/I would love to have every flare be predictable, every flare is very, very different in extent and severity. Just the reality of flares and UC. It might take 2-4 weeks of asacol at maximum dosage to start feeling a relief. I would not loose hope, just yet. Likely you are just having a more severe flare now, then you have had in the past. That will take a bit longer to control then you are accustomed to, and might require stronger dosages and/or more medications then you are used to, to recover with.

If you've been reading us for as long as you say, then you must've anticipated the following question to you: "Have you ever been on rectal-route medications?," That is a suppository (pentasa/canasa/mesalamine/asacol suppository), rectal foam, or retention enema (rowasa/pentasa/salofalk/mesalamine/asacol enema) form of asacol/mesalamine? That should be the next thing you ask for, in addition to your maximum dosage of asacol. As we heal the fastest and have the best results by treating from both ends.
Posted 7/22/2019 8:55 AM (GMT -6)
If you're flaring, I don't see why your doctor hasn't upped your Asacol to 12 a day. That's the max. dose. I also have no idea why they tapered you down to 1 per day. That small of a dose would do absolutely nothing and drugs like Asacol are meant to be taken for life at a maintenance dose (for Asacol, I would think that would be at least 6/day; I've been on 12/day for over 10 years).

I also agree with the suggestion to try mesalamine enemas as your next step. They help many of us a ton. I would definitely try those before going on steroids if you can.

And welcome to the forum!
Posted 7/27/2019 6:52 AM (GMT -6)
Thank you Sara14 and ipoop (great name!) for your welcome and for the ideas. I do use the Salofalk rectal foam once per day when I am flaring. I have stopped bleeding but just having no sign of any kind of formed poop which has normally returned by now when I take the Asacol. Could I do more than one enema per day? And are there foods I should try? I have cut out gluten and sugars...so miserable!!
Posted 7/27/2019 8:08 AM (GMT -6)
Ask about going to 4,000-4,800 mgs of asacol a day (max varies by brand). Ask about doing multiple mesalamine rectal foams, suppositories or enenas a day.

The maximum doctor-prescribed mesalamine I've been on is 12,800 mgs a day. That's 4,800-mgs orally, and two 4,000-mgs enemas a day.
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