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

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mo'better
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 7/29/2009 10:20 AM (GMT -6)   
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?

quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 7/29/2009 10:35 AM (GMT -6)   
I would suggest you stay on the lowest possible dosage of a 5ASA oral med...as well as a maintenance rectal at least once a week.


All you can do is try to taper if that's what you want....we learn through experience. Some can go off meds, others cannot. Trial and error.

There's no wrong or right according to others...it's what your body needs. You'll figure it out.

How much Apriso are you on at this time?

q
*Heather* Status: flaring...Asacol 3 twice daily; Salofalk enemas nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 7/29/2009 10:48 AM (GMT -6)   
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!!!!!!!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 7/29/2009 12:06 PM (GMT -6)   
Do not stop taking your asacol. You need it for maintenance
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium


Britney_
Regular Member


Date Joined Jul 2008
Total Posts : 35
   Posted 7/29/2009 1:07 PM (GMT -6)   
I agree don't stop asacol. I stopped it and got the worse flare ever!!!!!
Current Meds:
9 colazal daily
canasa 2X daily
6mp 75 mg
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/29/2009 3:10 PM (GMT -6)   
I doubt the asacol is causing your sleep problems, there is nothing in it that should cause that. It is really a very mild drug, just specially coated to get to the colon, like your study drug.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


mo'better
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 7/29/2009 5:45 PM (GMT -6)   
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.

DDR11
New Member


Date Joined Aug 2008
Total Posts : 16
   Posted 8/3/2009 5:02 PM (GMT -6)   
Don't try and wean yourself....my story is just like Eva Lou's. For the last 3-4 years I am in and out of flares. Nothing keeps it under control and I am taking now 12 Asocol tablets a day, in addition to Prednisone (40mg) again. Going tomorrow to discuss Remicade.
Have had UC since 1998.  Experienced first flare shortly after the birth of my oldest son.
Age: 36
Mother of two wonderful sons, two stepsons and a beautiful stepdaughter.
 
Current Meds:
Prednisone:  27.5mg
Imuran:  100mg
Rowasa: Nightly
Asocol:  3600mg/day
 
Natural Remedies:
Lacto-Flam-x - Probiotic
Glutegenics - Gastro Intestinal Support
Endafen - Gastro Intestinal Support
Cal Apitate - Calcium Supplement
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16724
   Posted 8/3/2009 5:20 PM (GMT -6)   
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
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


psychocolon
Regular Member


Date Joined Jul 2009
Total Posts : 118
   Posted 8/3/2009 5:21 PM (GMT -6)   
Do not stop taking the Asacol. It is designed for long term use to keep one in remission.

Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 8/3/2009 7:07 PM (GMT -6)   
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
Age 34, Diagnosed with UC September 2008
Current Meds:
Started Azathioprine 100 mgs 6/22/2009 and Apriso 4 tabs daily 6/11/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Flaxseed Oil 2000 mg per day
Multivitamin
Also tried: Remicade, Asacol, Rowasa, Cantasa, Prednisone 2 times for about 3 months each


calm-on-the-outside
Veteran Member


Date Joined Aug 2009
Total Posts : 832
   Posted 8/3/2009 7:51 PM (GMT -6)   
Wow, you guys are a wealth of information! I'm going to go to my dr. appt on Thursday well informed. I hope that's ok with him :)

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 8/4/2009 11:46 AM (GMT -6)   
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) 
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