In remission - any advice on whether I should stop taking asacol?

I was in a clinical trial for budesonide specially coated for UC and went into remission (which is wonderful!), my doctor had me resume taking Asacol after the study ended. I asked what were the chances that I would stay in remission without taking anything and she said 40%. I have been noticing side effects from the Asacol like not sleeping well and would like to try to stop taking it but I'm scared to flare again. The doctor had me taking some samples of Apriso for a few weeks which seemed to have less side effects but it is more expensive and I'm pretty broke with no insurance (been buying Asacol online from Canada.)
Anyone have any advice? Should I try to taper off the Asacol & see if I feel a flare coming? Anyone have good experience with Apriso?

No, don't stop taking Asacol- it's a maintenance med designed for long-term use. I had the same brilliant idea, was in remmission & decided to stop the Asacol & just use a nightly Rowasa enema. Well about a month after I stopped I went into the worst flare ever, that lasted about 2 years, put me in the hospital, & I wound up going on & off pred, & using Imuran & Remicade in high, frequent doses to get the falre under control. Which did happen, sort of. I'm semi-controlled right now- still have bad urgency & pretty bad symptoms, accidents do happen! And, I'm back on the 8 Asacol a day anyway! I wish I'd stayed on them in the first place as I'm sure they would have kept me in remission. While quincy is correct in saying there's no right or wrong answer, most of the posters on here who stopped the meds promptly fell into severe, extended flares, leading to more & more serious & expensive meds to try to get things under control again. So, to sum it up- NO WAY!!!!!!!

I agree don't stop asacol. I stopped it and got the worse flare ever!!!!!

Thanks to everyone for their replies. I am taking 6 Asacol a day and was taking 4 Apriso a day when I had the samples. No, I don't know why the Asacol would make me not sleep well, I just know that when I started taking it again I immediately noticed that I was having trouble sleeping and not sleeping well, with no other variables changing. When I was taking it before the study I figured that I wasn't sleeping well because of the UC - abdominal pain & trips to the bathroom, but now I am feeling good so I really noticed the difference when I started back on the Asacol.

I wouldn't stop taking Asacol if I were you. I tried to decrease from 9 pills to 6 a day and I saw my symptoms start to return. I have heard of peopl being able to remain remission without taking drugs but for me, I haven't had any luck.

You can get on P&G's patient assistance program if you meet the guidelines. You need to make under certain income/year and have no insurance. You will need tax records to prove you're eligible.

http://www.pgpharma.com/patient_assistance.shtml

I take Apriso.

There is a card called the Apriso savings card that will refund you $50.00 per month's supply. Supposedly your pharmacy can apply the card like it's insurance (it has a group number and everything) but the one I use cannot process it. As an alternative, you can mail your original receipt with a copy of your card to receive a check in the mail.

I finally got my first check today (I mailed my first one on June 12th)!

From what I understand, 5ASAs are maintenance meds and you shouldn't go off them, but my transition from Asacol to Apriso (I asked for it since you only have to take it once a day) was seamless.

Anyway, good luck!

Jen

I'll join the chorus & add my "NO"! Don't stop it-- because you could flare again soon. It's not worth the risk, especially if you had to use steroids to curb your most recent flare. The best plan of action against UC is to get stabilized & try your best to stay that way by taking maintenance med & adopting a healthy lifestyle as to diet, rest, & exercise. I agree that paying for RX meds can be a huge problem in the U.S., but better to research patient assistance programs, etc. than to abandon maintenance med. Most of us need to stay on at least one drug indefinitely. It might help your insomnia to take your evening dose earlier and/or adjust your mealtime, beware of caffeine if you drink coffee, especially-- to see if that helps you over a few weeks. My experience with 5-ASA oral meds is that I have to drink plenty of water thoughout the day to mitigate any side effects. / Old Hat (30 yrs with left-sided UC; taking brandname Colazal for maintenance)