Asacol doesn't work for crohn's???

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skofbengsk
Regular Member


Date Joined Oct 2006
Total Posts : 234
   Posted 7/15/2009 8:44 PM (GMT -7)   
Ok, so I saw a new GI today and told him I had quit taking my meds about 5 months ago because I determined that after almost 3 years on asacol It really didn't seem to matter one way or another how much I was taking (4 - 12 a day) or if I took it at all, if I was sick I was sick and if I wasn't I wasn't. The only times I ever really felt releif was after a round of Entocort, antibiotics or both. He told me that for the vast majority of crohn's patients asacol is completely ineffective.  Has anyone else heard this from a GI?? My brother has also been on Asacol for many more years than I have and is rarely in remission, however he does not have insurance so he doesn't see the Dr unless he thinks his life depends on it.  My new GI is recommending 6mp. I am one of those people who don't think most man made chemicals are actually good for the body and my liver enzym tests always seem to come back elevated already, does anyone else think 6mp is a bad idea for me??
Dx CD Oct '06  remarried July '05 mom of 3 boys ages 12, 15, and my baby born Oct. 07. 
Asacol, entocort


LauryLu
Regular Member


Date Joined Dec 2008
Total Posts : 75
   Posted 7/15/2009 8:54 PM (GMT -7)   
Its so funny because I was going to post about this tomorrow. I just saw my GI and after being on nothing for 6months, after my whole life being on meds, I wanted to get back on asacol. I was on it for 6 years at one point and the rest of my life on pentasa. He said that Asacol is out of the question - that it is proven to not be effective in Crohn's. I see so many people on the forum that are on it and don't understand that if the evidence is out there then why are dr's still allowing their patience to continue on this. Maybe it works for a small amount? I read that Pentasa has almost the same effect as a placebo in studies and this is the in the same family as asacol. Unreal. This was what I was on for most of my life. It makes me pretty upset to be learning to this.
26 yo Female, Crohn's
Diagnosed at 6...symptoms at age 2
Bal-resection 1998
history of steroids, antibiotics, Asacol, Prilosec, Pentasa, 6mp Imuran, Remicade, Humira...
Humira 12/08 and stopped after 3rd dose
LDN 3.5mg Feb-July 09
starting Humira Again


GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 7/15/2009 9:04 PM (GMT -7)   
LauryLu said...
Its so funny because I was going to post about this tomorrow. I just saw my GI and after being on nothing for 6months, after my whole life being on meds, I wanted to get back on asacol. I was on it for 6 years at one point and the rest of my life on pentasa. He said that Asacol is out of the question - that it is proven to not be effective in Crohn's. I see so many people on the forum that are on it and don't understand that if the evidence is out there then why are dr's still allowing their patience to continue on this. Maybe it works for a small amount? I read that Pentasa has almost the same effect as a placebo in studies and this is the in the same family as asacol. Unreal. This was what I was on for most of my life. It makes me pretty upset to be learning to this.

Can you point me to this evidence? I've talked to several GE's and they all seem to think that Asacol is the best for maintaining Crohn's remission, at least for a while. None of them said it was ineffective. In fact, one of them mentioned a study done that showed Crohn's patients not on Asacol had shorter periods of remission. At any rate, if Asacol is doing nothing for me, not taking it would save me a good chunk of money.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 7/15/2009 9:07 PM (GMT -7)   
Asacol is used primarily for crohn's colitis when crohn's is affecting the colon, it's targeted to reach and release in the colon and therefore wouldn't have any benefit when it's affecting the small intestines. Doesn't necessarily mean that it will be effective for everyone with inflammation in the colon though, I myself had a severe allergic reaction to one dose of 4 pills within the first hour.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


dt19&99
Regular Member


Date Joined Apr 2009
Total Posts : 174
   Posted 7/15/2009 9:37 PM (GMT -7)   
I was on Asacol when first diagnosed... after quiting the meds and drs and then going back after 6 years and getting another scope my new GI said asacol wouldn't be as effective as pentasa for the area that was inflamed...

skofbengsk
Regular Member


Date Joined Oct 2006
Total Posts : 234
   Posted 7/15/2009 9:47 PM (GMT -7)   
I did have it in my small intestine when I was originally diagnosed by colonoscopy in '06, I am not exactly sure where it is now I have another colonoscopy scheduled for the end of the month.
GDen: I have no evidence just passing along what the GI said and was wondering what others had heard. Here is a tip as far as the money goes if you think it is working for you, if you have insurance copays, I don't know how much you are taking but if you are only taking 4 a day ask the Dr if he would up your prescription to 12 a day, then to have a 30 day prescription filled would actually last you 90. My old GI originally filled mine for 12 a day to get into remission but he left it at 12 so that if I got sick again he wouldn't have to call in and change the dose every time. Your co-pay is for a 30-100day supply right? mine was so when I called and ordered it by phone I got 1200 pills for $100, or when I went in to pick it up at the pharmacy it was 360 pills for 30 days. If I was only taking 4 a day $30 lasted 3 months. The insurance company never said anything.
Dx CD Oct '06  remarried July '05 mom of 3 boys ages 12, 15, and my baby born Oct. 07. 
Asacol, entocort


GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 7/15/2009 11:03 PM (GMT -7)   
I found that study I heard about:

Inflammatory Bowel Disease: Why Should I Take My Medications?
Dr. Sunanda Kane
www.ccfa.org/info/webcasts

I'm not sure though if it applies just to UC patients or CD as well.

To echo what pb4 said, I've also heard from several GE's that Asacol works only in the colon.

Stasi
Regular Member


Date Joined Jul 2009
Total Posts : 36
   Posted 7/16/2009 5:07 AM (GMT -7)   
This may be interesting to some once the results are published, it's a clinical trial to visualise the effect of Pentasa (from what I can see this is the same as Asacol) on Crohns.

http://clinicaltrials.gov/ct2/show/NCT00245505

It claims to be in phase 3, but I'm not sure when that means the results will be out.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/16/2009 6:18 AM (GMT -7)   
I always hear about how Asacol works in the colon. I have been on Asacol and successfully maintained in remission for over 7 years. My Crohns is in the most common area the TI and cecum. I always hear these claims about Pentasa and Asacol, but if you look on just this forum alone, you will see many who are successfully maintained with just one of these meds. If I were to stop my Asacol, I would most definetly flare. I did it once, and thats exactly what happened, and I know others on this forum that have had the same thing happen to them. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

BensMom
Regular Member


Date Joined Mar 2006
Total Posts : 57
   Posted 7/16/2009 6:30 AM (GMT -7)   
Obviously it varies patient to patient, but my son with crohn's colitis had been on Asacol for 3 years with no real relief in symptoms.  During that time we had also tried other medications - Prednisone, Entocort, Flagyl, Pentasa, 6-MP, Lialda and Remicade.  The Prednisone worked, but he started flaring as soon as he came off it.  Remicade worked for awhile, but then it started to only help him for about 3 weeks (he gets a double dose every 6 weeks) and then wear off.  As a last resort before changing anything else, his GI took him off the Asacol and put him on Sulfasalazine.  The change in his symptoms has been remarkable.  He is feeling better than he has in years, and is only having one bowel movement a day.  So, does Asacol work for patients with Crohn's?  I don't know - but it certainly didn't work for my son.  I only wish we had switched sooner.
 
Take care,
Nancy (son Ben, 15; Remicade, Sulfasalazine, Fisol, Boswellia)

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/16/2009 6:41 AM (GMT -7)   
I took the Sulfasalazine when I was younger and it worked well for me then too. But I am now allergic to Sulfa, so that one doesn't work for me. Isn't it weird how one medicine works so well for one, but not another. I have the stricturing type of Crohns, I have always wondered if that was why I was always able to be maintained with the milder meds.
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 7/16/2009 7:24 AM (GMT -7)   
the san diego chapter of the CCFA holds annual educational seminars. it was last year or the year before that 2 doctors there, in separate talks independent of one another, had data from research showing that in crohn's 5-ASA drugs are no better than a placebo. now that is what the data shows. it does not mean that it does not work for some, but basically for the vast majority it did not; however the placebo effect is very very real. from talking to my GI about this, he said most docs use it as it is a tool in the tool box and you gotta try something. i was always on 5-ASA drugs and i too never felt that they did anything for me but drain my bank account.

both doctors did say, and showed data attesting to, that 5-ASA drugs do work for UC. how odd....

5-ASA are mesalamine (sp?) drugs (sulfa derived drugs), like asacol, colazal, pentasa, etc. they all work the same with the same active ingredient, just different fillers and delivery mechanism allowing them to target slightly different areas of the digestive tract.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


skofbengsk
Regular Member


Date Joined Oct 2006
Total Posts : 234
   Posted 7/16/2009 7:25 AM (GMT -7)   
This is what he wrote down for me "only these heal A.steroids: Entocort and prednisone, B Biologics: Remicade or humira, For maintenance he said 6mp or Immuran. "Probably don't work" Mesalamine, Colozal?(can't make out the handwriting for sure, never heard of that one) or pentasa. "

That was his theory he also told me I had to quit smoking, but he said that for colitis smoking actually helps symptoms, He also said that the probiotic align is definately worth giving a try.
Dx CD Oct '06  remarried July '05 mom of 3 boys ages 12, 15, and my baby born Oct. 07. 
Asacol, entocort


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/16/2009 9:03 AM (GMT -7)   
Well IMO they can say all they want that its a placebo affect, but I can tell you it works very well for me. If I stop the Asacol, then I get sick shortly thereafter. And my Crohns is not in the colon.
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 7/16/2009 11:31 AM (GMT -7)   
I use only Pentasa and I swear it works for me.  Like Nanners I see a big difference when I don't take it.  It is not just "I feel better" or "I feel sick."  I see the visual evidence in the toilet.  My friends husband was diagnosed w/ mild crohns, had been bleeding for months, was put on Asacol, and the bleeding stopped w/in a week. 
 
Typically, if I do have a flare I need entocort but so long as I am taking the Pentasa I don't really seem to flare.  If I have a mild flare I go on a temporary liquid diet.
 
So long as I have insurance and any disposable income I will be staying on the Pentasa.  Those that stop taking it don't know what it is really doing microscopically inside the body.  Sometimes it takes years to flare but then it is too late to go back.  Others on here were in remission on 5 ASA's, thought they were useless, quit them, and wound up having surgery.
 
Everything is a gamble and if you are always sick then I agree that the 5 ASA's are a waste of your money.  But, if you are controlled by them, don't rock the boat!
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 7/16/2009 1:59 PM (GMT -7)   
Asacol was the first medication they put me on after I was diagnosed with Crohns and it didn't work at all.  I went directly to Pentasa which worked for awhile.  Then Imuran was added to the Pentasa.  Then the Humira replaced the Pentasa, still on the Imuran.  Then the Entocort got added to the Humira and Imuran.  Then that quit working so the Prednisone came into play.  Then the Flaygl . . .  It all just sucks doesn't it??  I'm beginning to wonder if anything will work longer than a year or two?  We must build up immunities against it.  Who knows?

Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum.  Currently have C-Diff.
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Levsin, Welchol 625mg, Flagyl 250mg, 3xday, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone & Entocort


sugarfoot
Regular Member


Date Joined Jul 2005
Total Posts : 138
   Posted 7/16/2009 2:05 PM (GMT -7)   
I have Crohn's colitis and Asacol alone did nothing for me. I was on up to 12/day in the beginning and never improved. However, once I started Imuran, things got much better. I was always told to stay on at least 9 Asacol perday, which I felt was pointless. Last year, I was switched to Lialda, 2/day. I hate taking pills, especially if I don't feel they're helping. This past appt, when my GI said "you're still taking your Lialda, right?" & I answered "no, not in 8 months" he told me that I have to take it. His reason was Lialda/Asacol, when used in conjunction with Imuran helps to keep inflammation down & reduce the risk of dysplasia. He promises it is indeed doing something, so I'm back on it.
Crohn's Colitis - officially diagnosed Feb. 2005
(Imuran, Lialda, Folic Acid, B12 injections)
Interstitial Cystitis - 2002 (Elmiron)
Raynauds - 2005
.::I can do all things through Christ who strengthens me. Phillipians 4:13::.
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/16/2009 3:41 PM (GMT -7)   
Asacol is considered a topical medication.  That is, it works when it touches the inflammation.   The active medication in Asacol (the 5-ASA) is loaded into an acrylic jacket that dissolves at a certain pH.  This pH is generally found in the colon, not the small intestine.  It is said that there is little systemic absorbtion of Asacol.
 
Other ASAs work in a similar fashion, but the active ingredient in sulfasalzine is made available by bacterial action.  It is also thought to be a systemically absorbed medication, which is why it helps with ibd-related arthritis among other benefits.
 
Personally, I had a terrible time with Asacol (for uc) but found a lot of relief from sulfasalazine.

seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/16/2009 3:42 PM (GMT -7)   
The FDA warns against 5-ASAs and Imuran used together, FYI.

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 7/16/2009 6:18 PM (GMT -7)   
I've been on Asacol for about 7 years, I'm not sure it works though. I had stopped taking all medications and I didn't notice any difference. I then had surgery to remove 18" of bad intestine. I was told by my GI that I would never need surgery, so did Asacol work? I'm still currently on Asacol, my doc wants me to go on Methotrexate or Imuran for maint. meds. I'm still leary as to all of the side effects that go with those. Probably by the time i decide to switch, I'll need another surgery. lol!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Protonix,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 7/16/2009 8:36 PM (GMT -7)   
I thought that it wasn't work either, so I went off of it. Then weeks later I got sicker, and started to flare. So I went back on it, and my symptoms eased up. Since there is no cure, Asacol isn't going to keep us in remission. It's not even a very powerful medication. But I do believe it does help keep us in remission longer then without it. Keeps the damage down in there a bit. We do need all the other medications when things get bad, but I do believe in it as a maintenance med.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.


Stasi
Regular Member


Date Joined Jul 2009
Total Posts : 36
   Posted 7/17/2009 4:17 AM (GMT -7)   
I hope this won't be too long a post, but I can't find a way to link to the actual study.

Review article: the evidence base for interventions used to maintain remission in Crohn's disease
129: Aliment Pharmacol Ther. 2008 Jan 1; 27(1): 11-8. Epub 2007 Oct 5. Akobeng AK.
Department of Paediatric Gastroenterology, Booth Hall Children's Hospital,
Central Manchester and Manchester Children's University Hospitals, Manchester, UK.

BACKGROUND: Crohn's disease is characterised by recurrent flare-ups alternating with periods of remission. A number of interventions are currently used in clinical practice to try and maintain remission in Crohn's disease but the evidence base for some of them may be questionable. AIM: To review the available evidence on interventions, which are currently used to maintain remission in Crohn's disease.

METHODS: The Cochrane Library and Medline (Pubmed) were searched for level 1 evidence on specific interventions. Search terms included 'Crohn's disease or synonyms', 'remission or synonyms' and the names of specific interventions.

RESULTS: Azathioprine, infliximab and adalimumab are effective at maintaining remission in Crohn's disease. Natalizumab is also effective, but there are concerns about its potential association with progressive multifocal leukoencephalopathy. Long-term enteral nutritional supplementation, enteric-coated omega-3 fatty acids and intramuscular methotrexate may also be effective but the evidence for these is based on relatively small studies. The available evidence does not support the use of oral 5-aminosalicylates agents, corticosteroids, anti-mycobacterial agents, probiotics or ciclosporin as maintenance therapy in Crohn's disease.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/17/2009 6:22 AM (GMT -7)   
I always wonder if the Asacol or Pentasa that works in some of us, is because of the type of Crohns we have. I have the stricturing types of Crohns. To those who are having success with the 5-ASA meds, what type of Crohns do you have?
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Stasi
Regular Member


Date Joined Jul 2009
Total Posts : 36
   Posted 7/17/2009 8:18 AM (GMT -7)   
I do actually think the Pentasa I'm taking is having some effect. I've had much less D since starting it just over a week ago, I've not seen any change in pain though.

I also stopped taking iron tablets at the same time though, and the GI doctor I saw at the hospital said iron can cause problems for people with Crohn's and cut my dosage.

From what I saw on the screen at my colonoscopy there was alot of yellow stuff, and blood. The report they gave me said "ulceration". Is that indicative of a type of Crohn's?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/17/2009 8:29 AM (GMT -7)   
No "ulceration" is not indicative of the type of Crohns you have. There is stricturing, inflammatory, and fistulizing types of Crohns. I have for example the stricturing. I tend to get alot of scar tissue and tend to get bowel obstructions with my Crohns. Hope that helps. I do know, no matter what these doctors or studies are saying, in my personal case and for a few others on this forum that these meds do work.
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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