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remission and tapering

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Ulcerative Colitis
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Posted 1/18/2010 10:32 PM (GMT -5)
How does your doc know how low you can go on maintenance meds to maintain remission for as long as possible?
Posted 1/19/2010 6:57 AM (GMT -5)
Doctors can't really know how long a maintenance med will keep someone in remission for (and for as long as possible) as we all react differently to different meds and have different triggers and symptoms. UC really is a trial-and-error process...and some people can stay in remission for decades...so hope that you do too.

In the document that Q posted on mesalamine usage, one of the key factors determining people staying in remission was making sure you took your daily meds as required and didn't skip/forget doses.
Posted 1/19/2010 9:40 AM (GMT -5)

Trial & error . . . . I'm in remission right now and my Dr is trying to get me from 9 Asacol's to 6 by removing my mid-afternoon dose.  I'm tapering down but if I start having symptoms I'm sure he'll put me right back to 9 again. 

Posted 1/19/2010 12:26 PM (GMT -5)
Howright...you should split the dosage to twice daily....making it 8 altogether and one less pill. The trick is to lower the pills by one a week.

For you go to 8....then take one off the morning for a week. Then take one off the night for a week.

That'll get you down to 6 daily.

You should also be on rectal meds....

quincy
Posted 1/19/2010 3:28 PM (GMT -5)
Thanks everyone for elucidating what wil be happening to me. I do feel I'm in remission now. I feel perfect, in fact, except for all this hair loss.

The thing is, if you start showing symptoms, iwth the lower amount of maintenance meds, isn't it too late and you have to go back on prednisone and start all over?

Ellen
Posted 1/19/2010 4:43 PM (GMT -5)
quincy, Canasa seemed to make a big difference. It was a turning point. Do you really think I need to ask my doc about rectal meds as well?
Posted 1/19/2010 5:00 PM (GMT -5)
 

Thanks for the suggestion Quincy! 

Right now I'm dropping my afternoon dose by one every week so that I can hopefully get down to just 3 in the morning and 3 at night.  I sure hope it works because I really want to get rid of that extra dose!

Posted 1/20/2010 1:28 AM (GMT -5)
You're welcome Howright....and I still stress the rectal meds..lol.

q
Posted 1/20/2010 1:30 AM (GMT -5)
Ellen, are you still using the Canasa? it is considered a rectal med, but I'd suggest the retention enemas.

The goal should be for you to hopefully stay off the pred and use the oral/rectal 5ASA meds to deal with your flares.

quincy
Posted 1/20/2010 7:26 AM (GMT -5)
You could give the enemas a try as well and see how they work for you...but if canasa works well then that's great too. I actually find canasa suppositories to be more effective for me than mesalamine enemas. And if want the canasa to reach higher up then you can stack them up by using 2-3 of them, inserting one after the other.

As Quincy said, you should try to deal with any flare up with 5ASA meds by playing around with doses and the different kinds available (oral, enema, foam, suppositories) before getting on pred. Also, keep in mind that after one round of prednisone you should try to give your body a break away from it to avoid longer term side-effects or to avoid getting dependent on it. My GI specialists advice was that if you're on it for X weeks, then you should be off it for at least 3X weeks before even thinking of having to use it again.

Also before having to give prednisone tablets a try again, there are steroid foams and enemas that can be used and that have much fewer side-effects.
Posted 1/20/2010 8:41 PM (GMT -5)
yes. thank you all for the advice. I'm on 0 prednisone now and feeling great... hopefully, the asacol, canasa, vsl 3 combo can keep the uc at bay, i've reduced the vsl 3 to one packet a day, supposed to talk to my gi in two and a half weeks about reducing other meds. I just pray that it's not reduced too much. Still watching my diet, for more reasons than one. I was the one complaining ad nauseum about how thin I got, now I have a bit of a reverse problem.... :-) (it's probably Zyprexa -- a real weight gainer)
Posted 1/21/2010 8:07 AM (GMT -5)
This is my first time on any forum. I have had uc for about 12 years. I am now 39. i take 150mg of aziathioprine daily. I weigh 12 stone, which is how the az dose seems to be decided. I have about 2-4 bm's daily. No pain. Blood most days. try to avoid; sugar, alcohol, wheat, yeast, fibre, diary. Today i saw some good results on the spinach and sunflower diet which i thought i would try. i do think it is connected emotionally. any suggestions for blood free and solid stools?
Posted 1/21/2010 2:58 PM (GMT -5)

teare said...
This is my first time on any forum. I have had uc for about 12 years. I am now 39. i take 150mg of aziathioprine daily. I weigh 12 stone, which is how the az dose seems to be decided. I have about 2-4 bm's daily. No pain. Blood most days. try to avoid; sugar, alcohol, wheat, yeast, fibre, diary. Today i saw some good results on the spinach and sunflower diet which i thought i would try. i do think it is connected emotionally. any suggestions for blood free and solid stools?

teare...welcome to the forum. To get a better response, click on new topic and start a new thread. That way people will read your post as a separate topic to this one, and respond to it appropriately. Other than aza what else are you taking?
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