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Symptomatic remission! Now, 5-ASA taper?

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Ulcerative Colitis
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Posted 8/29/2021 8:49 PM (GMT 0)
Hi,

I had simmering, mild rectal inflammation for a year and a half until I bumped up to 4.8g Lialda (in addition to nightly Rowasa). My symptoms disappeared immediately and I’ve been stable for three months. Now I’m debating whether I should stay at these dosages indefinitely or try to taper them. Doc thinks I should just quit enemas completely but I know now that’s bad advice.

What are your experiences? How long were you on high/flare doses before tapering down? Have any of you stayed on high doses long-term?
Posted 8/29/2021 8:53 PM (GMT 0)
What were your symptoms as part of the simmering inflammation?
Posted 8/29/2021 9:00 PM (GMT 0)
Blood in stool. Small amounts, but it kept coming back intermittently. Several times a week. Occasional mucus. I just couldn’t get it to tamp down for 18 months or so. This resolved in May and hasn’t been back so far.
Posted 8/29/2021 10:33 PM (GMT 0)
what did you take before the 'bump' ?


TT
Posted 8/29/2021 11:56 PM (GMT 0)
I was taking 3.6g for a few months. I got scoped in April which showed mild inflammation between 15cm-25cm. Upped to 4.8g in May.
Posted 8/30/2021 4:34 AM (GMT 0)
how much diet tweaking have you done since 2014 ?


TT
Posted 8/30/2021 6:25 AM (GMT 0)
Do you have a copy of your recent scope biopsies results?

No...don't stop the enemas...start tapering at every second night for a while and see how you do.

Don't lower the oral until you are at maintenance rectals (which is suggested twice a week).
What is the dosage of each pill?

Good to hear your symptoms have much improved.

q
Posted 8/30/2021 9:29 AM (GMT 0)
TT: I eat whole foods the vast majority of the time now. Avoid refined sugar. Minimal alcohol. Those are the changes.

q: The biopsies mention “mild chronic colitis in the recto-sigmoid colon.” All the rest are normal. Any more detail I’d have to request from the clinic. They aren’t very thorough.

I will try to taper the enemas down to every other night for at least a month before dropping down any further. I skipped a night about six weeks ago and I felt like my gut started feeling off by the evening the next day. Maybe it’s not in the cards for me to reduce - then again maybe I’m healed enough now to do it. Gotta try. And I stressed to my doc that enemas are keeping me normal and he acquiesced to give me some refills, so that’s good.

Also, the tablets are generic Lialda at 1.2g per. I have distal disease but for whatever reason it took a higher dose of orals to tamp down the inflammation. I find it mysterious considering I’ve been on nightly enemas for 18 months or so. Would’ve thought those would cover that area well enough. It’s a befuddling disease I guess.
Posted 8/30/2021 11:17 AM (GMT 0)
i would suggest looking at the AIP diet or the IBD-AID diet from UMass Medical School -


TT
Posted 8/30/2021 4:57 PM (GMT 0)
Guigsy...I agree that the enemas should have done their thing over 18 months. It's good the results of the scope were mild...and kudos to the doc for continuing the refills.

Trying every second night will give you a good perspective on how you're doing.

You could ask for suppositories to use on the nights you aren't using the enemas.

q
Posted 8/30/2021 8:45 PM (GMT 0)
I would taper both oral and rectal but not at the same time. And I would not completely quit the enemas. Like quincy said. smile P.S. Congrats on the remission!
Posted 8/30/2021 8:50 PM (GMT 0)
You posted above that you have "distal disease". Distal includes the descending colon, the section above the sigmoid where mesalamine enemas don't reach. That's likely the reason your doctor put you on both oral & rectal meds. I never got a lengthy remission until my doctor found an oral mesalamine that treated the descending colon, in addition to sigmoid & below. Good luck with tapering the enemas whenever possible; Quincy gives experienced, wise advice on that. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 8/30/2021 10:15 PM (GMT 0)
Old Hat, I used incomplete terminology. Most of my colon is normal, including the descending colon. I have inflammation in the rectum and recto-sigmoid is what the biopsies said... doc said it barely creeps in to the very distal end of the sigmoid (Should have worded that better). Been that way since I first got diagnosed. My first doc had me on enemas for months and never offered orals until I requested them based on this forum’s advice. New GI thinks I shouldn’t be on enemas at all. Suffice to say I’m looking for a new clinic.

TT: I’m going to check that diet. it looks like I can try the AID diet while still eating plant-based so I like that.

I will definitely try tapering rectals first... if I stay stable (crossing fingers) I’ll probably stick with the oral dose for a few more months before dropping down. No rush to that. If things get wonky I’ll be right back up to nightly enemas though. Thanks everyone!
Posted 8/31/2021 11:43 PM (GMT 0)
No, do not reduce the dose of either! Certainly not yet, at any rate.

This disease has a nasty habit of spiralling out of control. If I were you I'd maintain the current regime, keep your boot on its neck for as long as you can and give your bowel as much time to heal as possible.

Bear in mind, it's been demonstrated that your likelihood of having a flare up decreases the longer you stay in remission. Mesalazine is a very safe drug to use long term - there are lots of negatives imo to tapering off, and few benefits
Posted 9/1/2021 4:57 PM (GMT 0)
I agree with Mrsmith. Stay at the dosages that are working for a good long time before even thinking about tapering to maintenance dosages. Then only do one at a time and go slowly ... like at least a month for every change. Mesalamine is safe at max dosing indefinitely so there's no need to hurry a taper. Make sure you are 100% healed before changing anything.
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