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When/if to taper mesalamine enema?

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Ulcerative Colitis
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Posted 3/16/2016 8:26 PM (GMT 0)
been tapering slowly off pred and finished that 2 weeks ago. Been on the foam mesalamine enemas for 5 weeks and they have made the biggest difference. Not the pred. Last bits of blood went about 2 weeks ago and everything is normal and has been for 2 weeks. No blood, no urgency, no mucus, 1-2 normal bm per day.
So I currently take 4.8g of oral mesalamine and 1g mesalamine foam enema.
I was put on increased oral dose when flare started. So should I try reduce oral bit first a little or taper enemas to every other night???
Don't have an issue with enema as such it's just it makes things a bit mushy in the morning when I pass the enema back out
Posted 3/16/2016 8:54 PM (GMT 0)
I would hold steady where you are now for a couple more weeks before changing anything.
Posted 3/16/2016 9:56 PM (GMT 0)
Ditto...definitely stay at where you are for a few more weeks, but I'd suggest you lower the oral dosage before the enemas.

What was the oral dosage before it was increased?

What's the extent of your UC...limited or throughout? and what were your symptoms before going on Pred?

Awesome you're doing so much better.

Is this the first time on the enemas?

q
Posted 3/16/2016 10:23 PM (GMT 0)
I didn't taper my oral or rectal meds at all until almost a year. Just because your symptoms have all but gone doesn't mean that inflammation has.
Posted 3/16/2016 10:43 PM (GMT 0)
keep doing what you are doing FOREVER !

:-)
Posted 3/16/2016 11:12 PM (GMT 0)
Yeah....don't change a winning formula. For me rectal meds are key--you are lucky to have the foam mesalamine enemas. Keep doing what you're doing.
Posted 3/17/2016 6:10 AM (GMT 0)
Left sided distal uc. First time in using ememas. Better response from them than 30mg of pred!

Symptoms before I started pred and enemas were urgency, blood, mucus, not formed stools. When that flare started I was on 3.2mg of oral mesalamine and that was inc to the maximum 4.8g when the flare took hold. Didn't make a diffence.
I was then given pred which at 40mg helped a bit but as soon as I dropped to 30mg and downwards things got worse again. I was then given enemas alongside and within days things massively improved and have continued to do so! Even off the pred.
I am just a bit concerned I have no where left to go if I flare again and already on max dose of oral mesalamine and foam enema. Tho I could always inc the enema I suppose if needed
Posted 3/17/2016 11:27 AM (GMT 0)
There's always more and different medications to try, should you flare badly again; so don't worry about that point. You're feeling better, it was hard fought, so be cautious. Wait at least several more weeks before changing anything.

There's generally two schools of thought, first take as little medications as possible, second keep taking the same medications and doses that got you into remission as your maintenance treatment (minus prednisone of course). You might be able to reduce some medications, you might not be able to, it's unknown. Uc has a tendency to spread in extent and severity over time, and it might take more medications now to maintain the quality of life you now enjoy. I used 4.8 grams of mesalamine and a nightly rowasa as a maintenance treatment for multiple years(I tried reducing and my symptoms quickly got worse). Some are able to taper/reduce a bit, just do one thing at-a-time and wait a few weeks and see if you have a regression or worsening of your symptoms (if your symptoms get worse go back up in dosage immediately). Like try doing rowasa every other night. Some are successful in getting rowasa down to twice a week. Although these medications are mild anti-inflammatory medications, well tolerated by most without harsh side effects. So, you're not gaining a whole lot by reducing things. It's up to you regarding which school of thought you adhere to, good luck!
Posted 3/17/2016 6:00 PM (GMT 0)
I totally disagree with staying at the max dosage that got you into remission since you've never used the enemas prior to being on prednisone or even before increasing the oral to 4800mg daily.

Secondly, you've never been through a tapering process orally/rectally....so until you try that, you'd be best to not stay at the max regardless.

Are you on dosage increments of 1200mg, 800mg or 400mg oral? meaning, what exactly are you taking?


Please explain left-sided distal...do you mean limited to rectum/sigmoid? or just the rectum?...etc? I'm asking for specific, actually.

q
Posted 3/17/2016 7:52 PM (GMT 0)
My diagnosis sheet said mild to moderate left sided uc involving rectum and part of sigmoid. That was when I was diagnosed about 10 months ago. I was started off on 2.4gof oral mesalamine which worked great for few months. I then started flaring and dosage was upped by 800mg to 3.2g and I was given a short course of pred. At that point I hadn't had my ibd hospital refferal so normal doc was prescribing. I later found out going straight to pred wasn't ideal but doc was not a specialist.
All was fine for another few months and was under care of ibd clinic who initially said next flare would be dealt with by ememas given location of inflammation. I started flaring badly shortly after and was told to increase my oral mesalamine to max 4.8gdose and was given just 2 weeks of enemas which in hindsight wasn't long enough. I was then given long course of pred.
When I had little luck with pred (persistent red bleeding, urgency) spoke to a lovely ibd doc who prescribed ongoing long term mesalamine enema and improvement is 100% 5 weeks on.
My enemas are 1g and oral tablets are 400mg each so currently taking 12 a day!!
Posted 3/17/2016 9:12 PM (GMT 0)
Interesting how the term left-sided wavers between doctors' diagnosis. Mine is the same as yours...never heard it called left-sided. I would consider into the descending colon as left-sided, however. I needed clarification with you, however.

So, you being on 400mg oral mesalamine x 12 will be easy tapering to whatever dosage will sustain you. It could take about 6 months, and it's possible that the 3200mg daily or the 2400mg will be fine. Upping it by 800 daily as needed depending.

I do up my oral from 2400mg to 3200mg when flaring and lower it once it's done (by 400mg a week).

Yes, you should have also been on the rectal enemas when initially flaring. a 1g dosage is very low, and they do go up to 4g, by the way.
So...you have a wide degree of increase to consider.

It's frustrating for me to hear light dosage rectal meds and heavier oral dosage with distal disease...yes, hit it from both ends, but the oral mesalamine won't hit the rectum.

My advice is to stay on the enemas nightly till you're off the prednisone and for a while afterward. Only then, consider to taper to every second night, and then to every third night. If all goes well, consider a twice a week regimen.


Of course...I base my opinion on experience and doctor's advice. I've never been on prednisone, even during my worst flares. Maybe this will be the only time you'll need it considering you've been dealt with by different doctors.

Keep us posted how you're doing.

q
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