Cutting back on Pentasa/5-ASA while in remission?

[JDTM]

Hello all,

This question is for everyone using Pentasa, Asacol or some other 5-ASA as a maintenance med during periods of remission. While in remission for an extended period of time, do you cut back on your 5-ASA medication? By that, I do NOT mean stopping it completely -- I'm wondering if you ever cut down to below the maximum dose. I'm currently taking 4g of Pentasa daily, but if I manage to achieve remission and it holds for a while, is it realistic to cut down to a lower maintenance dose like 3g or something?

My logic is that if I flare up again, bumping the Pentasa back up might help a little bit more.

If you've ever done this, let me know what you think!

 

[Gwen pippy]

Hi Jesse
I tried it over the years while in remission on asacol and pentasa and found that I would cruise by for a few weeks with no change but then would see symptoms start up on a mild basis, another time I stayed off it all together and the hospital put the fear of god into me by saying it wasn't possible to stay off meds and be in remission and if I did it had to be that my CD had turned nasty and it was calm before storm, I agreed to a scope just in case they were right and had one of the worst flares I've ever had, my guess was that the scope had triggered it, they said it was a flare just waiting to happen, we agreed to disagree. I would say boring as it may sound talk to your GI first and see what their views are.

hope it works out for you.
Gwen

 

[sfmreb2]

Hi,
I tried the 4000mg a day and it is to much for me. I'm taking 500mg with each meal. I had a lot of "D" oo:with the full dose. I'm also taking 2 entocort (for 4 months) and I have the Remicade every 8 weeks, they may be making the difference. My GI guy told me to play with it and take the dose that worked for me. He would like me to get off the Remicade (10 years now), but understand I'm a little worried about going off of it. Some GI drs think they know best, but I have been at this for almost 40 years now and mine is very flexible. So, get to know how your body responds, go slow, talk to your GI dr and come up with a plan that works for you.

Steve in Walla Walla

 

[Cross-stitch gal]

I would like to eventually go down some with my dose. Right now I'm taking 4000mg of pentasa as well. While I was on the asacol though I did back down on it while I was in remission. Still took the meds but was putting fewer pills down the hatch. At the time I didn't have as much of an understanding gi so I did the backing down on the meds alone. Hopefully yours is a little more understanding than mine has been.

 

[hawkeye]

I was on 3grams/day when diagnosed and have kept this dose through remission (been on 3 grams a day since 1991).

 

[SarahD]

I used to cut back my Pentasa dose whilst in remission. In remission I'd take 3g then if I flared I'd go up to 4g. Sometimes increasing to 4g was enough to bring a flare under control if I reacted quickly enough at the first sign of symptoms, but sometimes a course of steroids would be needed to.

 

[sfmreb2]

SarahD, When you drop down to 3g do you just take them with meals?

 

[SarahD]

I've never taken mine specifically with meals. Whether I'm on 3g or 4g a day I still split the tablets into 3 doses a day, usually taken around 7am, 5pm and 9:30pm. The timing of the middle dose isn't ideal but because the Pentasa tend to make me gag I don't like taking them when I'm at work, so I just wait until I get home.

 

[DennisD]

I'm jumping in to a topic I think about everyday. I'm supposed to take 8 500mg of pentasa a day and 3 3mg of Endocort. I always play with the dosages. If I'm feeling good, like lately, I stop the Endocort completely and go to between 2 and 4 pentasa a day. My doc says I should stick with what works. I do tow other things that I feel help a lot. I do smoothies and a pro-biotic everyday. The smoothies always have yogurt and the juice of two lemons I them, besides other fruits and what not like flaxseeds. I'd like to cut out the pentasa some day.

 

[SarahD]

Dennis, I was told that it was ok to play around A LITTLE BIT with drugs like Pentasa and Asacol to find what works for you, but never with steroids or any of the stronger meds (like Azathioprine). I would be really careful about changing your dose of entocort, in particular it's important that you don't just suddenly stop taking it without tapering down the dose over a few weeks or even months.

 

[ctrl z]

When I was using cannabis, I took half the prescribed dose of Pentasa. Now that I am taking a break from cannabis I take the full dose (4g).

 

[DennisD]

Thanks Sarah, the Endocort has been especially confusing because the mfg says it is only effective for 90 days. I cut back a while ago and haven't taken more than 1 a day unless I felt something coming on, then I'd go back to 2 a day. Endocort works best for me though.
I just know the lo g term affects are not very good.

 

[mostmann23]

anyone have severe cramping within 24 hours of starting pentasa? my husband did after the first 4000mg dose. he was on remicade for 10 years and just stopped about 8 months ago. the long term effects had him concerned. his crohns is probably mild to moderate as he's symptom free 90% of the time.

 

[sfmreb2]

anyone have severe cramping within 24 hours of starting pentasa? my husband did after the first 4000mg dose. he was on remicade for 10 years and just stopped about 8 months ago. the long term effects had him concerned. his crohns is probably mild to moderate as he's symptom free 90% of the time.

I started on the 2000mg dose of Pentasa at first, then went to he 4000mg and things got worseoo::frown:. I'm not sure if it was taking the last dose at night without eating. I would suggest he try taking it with meals. I ended up cutting mine down to 500mg with with each meal (3 a day). I'm also taking entocort. So I'm not sure which is working but I have found the right combination. My GI dr told me to experiment and go with what works. Good luck.

 

[Dutch941]

My son is 13 and diagnosed 10 months ago with severe UC...total colon involvement.....brought under control by prednisone..and then pentasa/ 6 mp....just this week we stopped 6mp due to liver issues. Does anyone have similar experience? Wondering people's thoughts about how likely the full dose of pentasa will succeed without another drug?