Starting to taper my orals

In May I flared for a few weeks and upped my Salofalk from 8 to 12 per day. Up to yesterday I took 12 a day to get out of the flare and maintain things for a while. I have been doing good since June..steady at 1-3 bms a day, no blood, urgency, well formed etc.

Enemas are down to every 3rd night .

Yesterday I started to take 11 Salofalk per day and I was thinking to do this for a week or two , then go to 10, stay there for a week or two, then to 9...and on.

I do not know if how long I should stay at each taper AND how low I should go?

Eventually the enemas will go to twice a week as well.

 

How low should I go?
I was thinking down to 8 pills a day.

Actually 12 is the top dose for salofalk tabs. I took 12 tabs for years with my Docs blessings. I switched to asacol when I moved to the U.S., although I never felt they worked as well for me. Apriso seems to be a good substitute for Salofalk as they both dissolve at a PH of 6.

The problem with tapering is that you don't know how low you can go until your symptoms start coming back, and then it can be hard to get back into remission. Since mesalamine has so few side effects, I never felt the need to taper way down, although my first GI doc always seemed to want me to taper down to about 6 or so.

Yes, you are right. If you were to look at the product monograph, it would likely state the usual does is 3-4 grams (6 - 8 tabs) for mild to moderate flares. However, all 3 GI docs I had in Canada told me 12 was the max to take while flaring, and none would go above that. In other words, 12 is a very common dose for people flaring badly. After a while I just stayed at 12 because when I dropped, little strands of bloody mucous would start to appear again.

Now for pentasa, nobody would go above 8 tabs/day for some reason, even though they are the same strength (500 mg). I guess it is because more dissolves in the small bowel and therefore more gets absorbed into the blood and needs to be filtered out by the kidneys? Just guessing.

My doctor always said 12 was the upper limit for Salofalk. When I was diagnosed with UC I was put on 12 right away. I only started to play with that dose when I was pregnant and then when I was on humira..
You ask why I was on 12 anyway? Well, 12 did the trick to get me in remission for my first flare...the next time I flared nothing worked but steroids...but I WAS NOT ON ANY RECTALS at all..shoulda been for sure.
When I flared this MAY I was on 8 SAlofalk per day and nightly enemas..still flared and when the doc looked in the lower end it all looked good so flare was above...12 KICKED me right back into remission..its Aug now...down to enemas every 3rd night and 11 Salofalk per day. Going to try to go back to 8 and see how goes it.

When I get pregnant, I get pregnant..no deadlines...other than a summer baby would be nice so maybe once the winter hits we wont focus on it as much...