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09-22-2011, 12:05 PM   #1
Cat-a-Tonic
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Asacol questions

I had a GI appointment today and he prescribed me Asacol. I believe he said 800 mg 3x per day. As most of you know, I'm not diagnosed yet, so this is a bit of an experiment to see if Asacol does anything for me (I've already tried pred and Entocort, both of which work well for me, and my GI feels I've got IBD, just not sure specifically what). I've been doing really well lately for the most part, but just not sure if I'm totally in remission or not. My CRP was 10 the last time it was tested, which is borderline normal. But I've still been having d a few days per week, and mucus 1 or 2 days per week, and the ocassional pain and nausea too. So I'm hoping Asacol gives me that final push into good remission.

I have a few questions about Asacol - for those who are/were on it, how long did it take to kick in for you? Did you experience any side effects? Did it help put and/or keep you in remission? Any advice for someone just starting on it?
09-22-2011, 02:23 PM   #2
outlier
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3 weeks. nearly to the day. it actually helped my feet. 3 weeks to the day but it made me so happy. I clam it got rid of my canker sores for a a few months but i also had a cortozon shoot around the same time so i can't truly say that. (long story how Asacol gets credit for the feet where the shoot was but it does).

I have had no real side effects. i think it made my pee orange. i had to take 2 in morning one in the afternoon, which i thought it was amusing.

Good luck!
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Diagnosed: Crohn's Oct '09
Extraintestinal: scleritis May '08, GERD Aug '09, ankylosing spondylitis Feb '10
Current Meds: Humira, Asacol, Dexilant, domperidone, Tramadol and a whole lot of vitamins
No more sulfasalazine, Methotrexate, Xibrom, Pred Forte and Iron
09-22-2011, 02:55 PM   #3
frank4360
 
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I have had Ulcerative Colitis/Chrohn's Disease (for many years doctors could not agree which it was) for more than 35 years - I am now 64. It is apparently a relatively mild case, and certainly I have heard of much more severe cases, though it never actually felt particularly mild.

For the first few years I was on some sort of Sulfasalazine; which appeared to do nothing but turn my
urine yellow, so I gave it up.

When I was about 50 the disease seemed to become more severe, and it certainly caused problems with my work (passing blood, visiting the bathroom ten or fifteen times a day, etc).

I was then prescribed Colifoam enema - which again seemed to have no effect.

After pressure from my wife I tried the doctor again in about 1998 - I was put on steroids
to control the immediate flare-up, and Pentasa as a long-term measure. This has worked very well until the last few weeks (August 2011).

I have just had a flare-up and increased the Pentasa to 8x500mg per day - no help at all - until after three weeks or so. Just now I am improving (no blood or mucus), but as I said in the Introduction forum, I suspect this may be related to returning to a daily dose of Omeprazole.

In summary, Pentasa (Asacol) has been a godsend for the last ten years; and I can think of no side effects.

Good luck.
09-22-2011, 05:05 PM   #4
Natalie38
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Hi,,
Itake ASACOL daily.

I take 2 400mg tabs 4 times a day.

It has completely helped me.
No bad side effects.
09-22-2011, 05:07 PM   #5
Natalie38
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I forgot to add, for me, it kicked in within that week. I was in a major flare a few weeks, then started asacol and pred, and was calmed done quite quickly after that. I am off the pred now, and still taking asacol daily. GI says I will be on Asacol for the rest of my life. Not so sure about that..but we shall see...
09-24-2011, 09:32 AM   #6
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I've been on Asacol 1200mg 2x/day for 8 years--I was put on it with Prednisone right when I was diagnosed, and I think it definitely helped me to taper off of the steroids. I'm not aware of any side effects. It kept me in remission for 5-6 years, and then my doctor added 6MP, too. Good luck!
09-25-2011, 09:38 PM   #7
Cat-a-Tonic
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Thanks all! I've been on it for a few days now, not sure if it's working but I haven't had any side effects so that's good. I also haven't had any d or mucus since I started Asacol so it may very well be working!
09-26-2011, 02:33 AM   #8
frank4360
 
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Happy to hear it seems to be helping.

Just a question for everyone. I seem to remember I was on Asacol some years ago, but here in France they moved me on to Pentasa. It seems to be the same drug, but the pills can be broken up to swallow - the pill consists of lots of little bits, each individually coated with whatever it is that allows the drug through the gut to work where it is needed.

Is this not available elsewhere?

Or is there another reason for Asacol?
09-26-2011, 10:05 AM   #9
littlemissh
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Glad that it seems to working and without side effects. Hopefully you will continue to get better.
Frank- sorry,can't help you as never been on pentasa or similar. The different preps are designed for release in different parts of the GI tract.
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
09-29-2011, 03:48 AM   #10
carolhew
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Cat thanks for asking about the Asacol. You saved me from posting a repeat question! I had an appointment with the GI today and he prescribed Pentasa and to start tapering the budesonide from 9mg to 6mg which I started when I was first diagnosed with mild Crohn's in June. Unfortunately still not in remission. Good luck with the Asacol!
09-29-2011, 07:12 AM   #11
scottmyster
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HI cat, i am on asacol 2400mg and had no side effects it put me in remission for 15 years, so the stuff does work you said you have having some good effects from it so far, that is very good to hear i hope it continues to work for you. best wishes.
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Dx Crohns 1990
Present medication
Asacol 2400mg and prednisone and buscopan and demerol for pain
Supplements
Omega -3 fish oils
Probotic supplements
B100complex vitamin

09-29-2011, 03:24 PM   #12
Cat-a-Tonic
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Carolhew, I was on budesonide (Entocort) from Oct '10 until April '11. I think I hit remission at some point after coming off of it, because I was still having one or two bad days per week when I was on Entocort. I actually felt better when I stopped it. So hopefully tapering for you will have a similar effect! Good luck!

As for me, it's been a week now and I definitely think Asacol is helping, I do feel better than I'd been feeling. I've had a headache for a few days now but it sure feels like a barometric pressure headache (we've had lots of rainstorms roll through and I always seem to get barometric pressure headaches from storms). So I don't think the headache is a side effect of Asacol. And on a positive note, I'm on my period right now, but it's much more tolerable! I usually get awful cramps and d on my period, but not this time around - it feels like Asacol is keeping everything nice and calm in my gut.
10-01-2011, 07:45 PM   #13
hawkeye
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I've been taking Salofalk since 1990. It and Imuran kept me in remission for many years. The only side effect (not sure if it was a real side effect) was extreme nausea the second day taking the medication.
10-02-2011, 01:39 AM   #14
toneloc
 
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Hi everyone
I am now on Pentasa which has helped me a great deal. I started the flare from hell in early July 11.

My Doctor put me on a load of meds to try to control it to no real effect. He introduced Pentasa and to be honest, after about 3 weeks things seem to have started to settle down, greatly reduced blood/mucus & diahorrea. I am feeling so much better now, able to live my life again without the terrible pain/cramps & other nasties that come this this condition.

In conclusion, keep on with the Asacol, it should start to help very soon

Tony
10-02-2011, 06:43 AM   #15
Paddy Holmes
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Happy to hear it seems to be helping.

Just a question for everyone. I seem to remember I was on Asacol some years ago, but here in France they moved me on to Pentasa. It seems to be the same drug, but the pills can be broken up to swallow - the pill consists of lots of little bits, each individually coated with whatever it is that allows the drug through the gut to work where it is needed.

Is this not available elsewhere?

Or is there another reason for Asacol?
I was prescribed Pentasa initially, I've been diagnosed with Crohns for 25 years, but it gave me migraines. It's not quite as effective as Pentasa in my opinion but I would rather not take Pentasa if I can avoid it, It's one of the known side effects...
Incidently, when you read the little slips of info that come with the meds, the side effects nearly always include diahrrea and headahes. Its a wonder we ever take any meds at all. Must be desperation!
hope this helps
Paddy
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10-16-2011, 10:47 AM   #16
QueenGothel
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My daughter is 3 years old and was diagnosed days ago. They told me I will have to teach her to swallow pills. So far so good. If she were to accidentally bite the asacol in half will it hurt her? Want to make sure I do the right thing the other meds are easier to get her to swallow. But the asacol and the iron are more difficult. Any suggestions feedback would really be greatly appreciated.
10-16-2011, 11:16 AM   #17
Jessi
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@ Mary

Asaocol is an anti inflammatory that is specific to the terminal ilium (TI) and the colon (depends on whether it is Asacol or Asacol HD). It softens as it goes through the stomach and small intestine, until it is soft enough to expose a small perforation in the pill once it reaches the TI. At that point, it will release the medicine as needed through the perforation as it travels through the colon. Your daughter's body will expel the shell of the pill into the toilet once the pill has done it's job and traveled the course of her digestive system.

If she accidentally bites it in half, I imagine the medicine would be released far to early into the wrong parts of her body. It may or may not hurt her, but I don't think it would help her either. Call your doctor for a better answer. I have never broken mine in half, so I don't know what it would cause. It's just my guess.
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Dx'd with Psoriasis in 1993
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Dx'd with Ulcerative Colitis on May 18, 2011

"Life isn't about waiting for the storm to pass... It's about learning to dance in the rain." ~Anon.
10-16-2011, 11:32 AM   #18
QueenGothel
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The pharmasist doesn't think she can bite it in half says it is too hard. But did tell me call poison control and ask them. Just trying to be a step ahead of a stressful situation as much as possible.
10-16-2011, 12:59 PM   #19
Jessi
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I think you're right to learn how to be prepared. I think you'll do a fabulous job!
10-16-2011, 01:28 PM   #20
QueenGothel
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FYI: poison control says neither of her pills should harm her if she bites them it will just be released in wrong part. Suggested i have the iron be dispensed on liquid but doctor said it is really gross. Since I have to give her asacol in tablet might as well do both then. She did say to inform her doctor of course if it were to happen. Of course I would. I have that man on speed dial 1.
10-16-2011, 04:59 PM   #21
Jessi
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That's good to know. Thank you for sharing that with us.
10-17-2011, 05:25 AM   #22
Paddy Holmes
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I have to take quite a lot of medication and have trained myself to take as many as pos at one time. Obviously your little lady will have to try a bit at a time but I suggest lining them up like a train on a table and asking her how many she can take. If you line them up on her tongue, they're easier to swallow. Treat it as a game at first and let her lead the way if she thinks she can take more!
Just a suggestion, I've been on medication all my life...
11-17-2011, 09:31 PM   #23
Bunnykfl
 
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[I] was diagnosed with Lymphocytic Colitis in April. I am on Asacol HD 800 mg 3 x a day. They are definitely helping. My question is the literature says they were only tested for 6 week periods. They do not know what happens after that. Has anyone been on it for more than 6 weeks?
11-17-2011, 10:37 PM   #24
outlier
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i've been on it for nearly 2 years sometimes 3x sometimes 4x now Once. nothing adverse that i would say is asacol fault at all.
12-03-2011, 09:17 AM   #25
Bunnykfl
 
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Thank you for the information. I was kind of afraid to continue but afraid to stop!
12-03-2011, 09:29 AM   #26
Paddy Holmes
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I've been on it for years as an alternative to Pentasa which gave me migraines. Asacol doesn't give me any side effects at all. Hope you get on ok...
12-03-2011, 09:44 AM   #27
QueenGothel
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My DD has been on it for more than six weeks. We are weening her off the steroid now. Doctor told me she will be taking this for years probably. Sorry it took so long to respond my life is crazy... Fixing up a house, moved twice, going to move into new house today.
12-05-2011, 11:12 AM   #28
Feather
 
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[I] was diagnosed with Lymphocytic Colitis in April. I am on Asacol HD 800 mg 3 x a day. They are definitely helping. My question is the literature says they were only tested for 6 week periods. They do not know what happens after that. Has anyone been on it for more than 6 weeks?
Hi Bunny! I've been on Asacol for 8 years, and I haven't experienced side effects. It still appears to be working, though I'm also taking 6MP, so it's hard to attribute symptoms to a specific medication. Good luck!
12-05-2011, 04:03 PM   #29
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I appreciate your reply. Thank you.
01-27-2012, 01:07 AM   #30
PVail
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Ive been on Asacol 800mg x 3 a day now for 6 months. It took about 3 to 4 weeks to have any effect but does help lessen the symptoms . Apparently the pill breaks down at differnt acidic levels in the stomach first and the in the terminal ileum. I believe it is the first step that doctors use when you are undiagnosed. Only side effects iI have noticed are increasingly sore ankles ,feet and a bit a nausia when you first swallow . As far a s i know ther are no long term side effects. Its a god send to me so far. Its not the answer but its a start.
hope this helps.
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