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Rectal meds - Taper and Maintenance?

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Ulcerative Colitis
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Posted 6/15/2011 10:45 PM (GMT 0)
Hello all,

I began my UC treatment with the stock Prednisone+Asacol treatment. I was unable to taper completely off pred. with bleeding and urgency at 10mg and just bleeding on the wipe at 15mg.

After the recommendation of the knowledgeable folks on this message board, I cajoled my doc into putting me on Mesalamine enema (Perrigo) by night and Canasa by day. Within a couple of days the bleeding and urgency went away and I have been able to taper to 5mg pred. successfully. Phew...

My question to people that might have dealt with something similar is: What can I expect as I continue to come off prednisone, and how should continue my rectal meds after the prescribed month's treatment (taper/maintenance) - especially when I get off prednisone. I trust my doctor, but I trust the experience of everyone here more.

As a side note: My diet is low-carb (a couple of servings of rice - 100g of carbs tops), lots of chicken and seafood, no dairy, peanut and olive oil, and well cooked veggies. I don't consistently take any supplements.

Thanks!
Posted 6/16/2011 12:16 AM (GMT 0)
dAetomeN, many of us use our rectal meds indefinitely. When we are feeling really stable we may go down to using them less often but the second we have symptoms, we start using them nightly or even morning and night. I have to say, for me, 5mg to 0mg was rough even with rectal meds. I am not saying you will have the same experience but take your time, don't push yourself if you're not ready. You will be off in no time.

My GI writes me 6 refills of enemas and Canasa usually. If I get to 0, she refills. I use Canasa more than enemas, especially in the morning.
Posted 6/16/2011 1:25 AM (GMT 0)
Thanks notsosicklygirl! That helps a lot.
Posted 6/16/2011 8:01 AM (GMT 0)
I would suggest you use the enemas nightly and continue to do so for at least 3 weeks after you're off the pred. See if all is good...if so, try tapering to every second night.

If that doesn't work, go back to nightly for a few more weeks, and try to taper to every second night again. Remain there for at least 3 - 4 weeks, then go to every third night.

The two enemas a day isn't as necessary unless the nightly don't work after a few weeks.

The Canasa in the morning is a good supplemental help rather than another enema.

I personally don't see low carbs as being positive...chose the carbs well and don't assume none is a good thing. Your body and brain needs them for fuel.

I also think that 2400mg oral 5ASA is a bit low at this point with you tapering off the pred. Maybe ask the doc if you can up it a notch until you're more level after the pred.

Wouldn't it be nice if you never had to use pred again?

The maintenance is to taper to a lower dosage and up the enemas as needed. It's a learned process by recognising symptoms early. It took me about 2 years to totally get the hang of it.

q
Posted 6/16/2011 9:15 AM (GMT 0)
dAetomeN,


notsosicklygirl covered the rectal meds.

A few words about prednisone. For some UCers the tapering from 10 mg down is the most critical and ought to be done very slowly and small steps.

Also, many doctors start the prednisone regime (in these days) from 40 or even 30 mgs. When I was young, the starting dose was always at least 60 for whole-colon-UC tribe.

I, personally, have never got much benefit from the enemas (tried several times), but luckily most people have.

Basically I do the prednisone tour, taper off and stay on maintenance drugs and in remission.

Good luck to you.
Posted 6/16/2011 3:31 PM (GMT 0)
Hi dAteomeN, I wonder if you could switch to hydrocortisone enemas (steroid type) while tapering, instead of the Mesalamine ones.  Then once you achieve remission or at least stop bleeding, you could continue with the Mesalamine if your dr. recommends that.  The steroid ones always worked for me. 
Posted 6/16/2011 4:40 PM (GMT 0)
Hi everyone,

quincy, thanks a lot for the feedback. When I was having trouble at 10mg on pred. I had asked my doctor about upping the Asacol, but he declined without much justification. I will keep your suggestion in mind as I continue to taper. So far I am at 5mg for 2 days and still having no trouble (knock on wood). You are right about the carbs, especially for me since I am a underweight as it is. My next helpless query for the board will probably be regarding weight-gain solutions :)

Thanks KiWi, I am being very cautious with my taper this time (after failing twice). I will stay at 5mg for 5 days, then drop to 2.5mg and monitor for a week...and taper completely off if all goes well. Thankfully, the enemas do seem to be lending a hand for me.

decaf, thanks for your post. I have heard about the steroid enemas in passing, but have not broached the topic with my doctor. Are they a prednisone substitute? Are there any short or long term side effects like pred. ? I will definitely bring this up at my next appt. along with my Asacol dosage.

Thanks again!
Posted 6/17/2011 3:02 PM (GMT 0)
dAetomeN, I can't say for sure if the steroid enemas will cause any problems symptom-wise for you, as everyone is different, and it also depends on how long you remain on them.   It gets absorbed quickly into your system via the inflammed part of your colon (a topical med), but it also does not need to be metabolized.  I've been on them for months at a time with no side effects other than maybe a little nervousness, (but certainly not any puffiness oral pred used to give me!), so I'm all for the rectal usage.   Once in remission, I alternate nights (one night using, next night not), and taper off that way.   

I believe quincy uses them as well, so hopefully you'll get more info soon. 

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