mesalamine / 5-ASA drugs

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CrazyHarry
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Date Joined Mar 2006
Total Posts : 1034
   Posted 4/22/2008 8:32 PM (GMT -7)   
so last saturday i went to the CCFA's san diego chapter 8th annual education seminar thingy. imho, the most important thing i learned was concerning the use of mesalamine (aka 5-ASA drugs, like pentasa, asacol, colazal, etc). turns out the data shows that they work well for UC, but they are no more effective than a placebo in crohn's. wow. and i heard this from 2 different GI's at independent lectures and they dont work with each other nor at the same hospital.

it makes sense to me cos i was this this stuff for years (i took 4 out of the 6 mesalamine class drugs) and i never felt any of them did anything for me. i never noticed a dose response. however i took these drugs for like 14 years cos my docs told me to. i only stopped taking them late last year as i had stopped fosamax a month or two earlier (bone scan showed i was pretty close to normal after being on that drug for like 11 years) and i was going to stop taking 6-mp as i suspected it was causing my anemia, so i figured i might as well stop the colazal too. glad i did now that i heard this news. i am not bitter or upset for being told to take them and not being told that they dont really work in crohns - who knows who will respond to the drug or benefit from a placebo effect? i am just kinda miffed at the money i spent on these drugs. i did a quick estimate and it is close to 3 grand (usd).

i am NOT advocating you stop taking these drugs if you are taking them. always consult your doctor before you do something so rash. all i am doing is relaying information i gleaned from two different GI's (and they backed up this claim with statistical data) and how it relates to my personal experience. if these drugs work for you, i would recommend continuing their use. feel free to bring this up to your doctor, but dont be surprised if what i have stated here is dismissed out of hand. so use your best judgment, combined with the advice and care of your doctor, if you choose to continue using these drugs or stop taking them.
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


FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 4/22/2008 8:54 PM (GMT -7)   
Hey Crazy Harry - I have heard those studies too and frankly they scare me because my Pentasa WORKS for me and I do not think it is the placebo effect. When I forget to take it I feel worse and if I am forgetting then I am not consciously thinking "you didn't take pentasa, you should feel sick." I am concerned that this study may lead to insurance companies not wanting to pay for the drug for crohns patients or doctors not wanting to prescribe it. My doctor says I am his only patient that does well on pentasa alone. I only used entocort once for a mild flare. I have another friend who is doing great on Asacol. All his bleeding has stopped. Pain and diarrhea cessation I could see being a placebo effect but NOT stopping blood and mucus.
26 Year old married female law student.  Diagnosed w/ CD 3 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 alos take a birth control pill to allow some fun in my life.
 
 


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 4/23/2008 4:42 AM (GMT -7)   
CH, this is interesting and it comes at a time when my son tells me he wants to stop Asacol. Don't worry, we won't do it without talking with his doctors. He feels it is doing nothing, though, and has felt that way for some time. Any idea how I could get my hands on the data you saw cited?

Fitzy, does the FDA (or whomever is responsible for these decisions) ever "un-approve" a drug for a specific condition? Especially one that's been approved and used for 60 years (that's what we were told about Asacol) for the treatment of a specific disease. I truly don't know and am curious...does this ever happen with an otherwise "safe" drug?... anybody?
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.


belleenstein
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Date Joined Feb 2007
Total Posts : 1010
   Posted 4/23/2008 4:48 AM (GMT -7)   
I haven't been able to find the studies. Can you link me?

Crazy, maybe it isn't a blanket rejection of 5-ASA. I'm surprised that your doctors continued to treat you for 14 years with 5-ASA if you were reporting to them that you had no relieve from symptoms.

Might it not be a case of it not working in all types of crohn's? With these drugs it is all about the precision with which they are able to deliver the dose. It has to be released where the crohn's is active in order to be effective. (And no drug is effective for everyone) That's why there are so many different formulations.

Like Fitzy it does appear to be working for me, although only in combination with an immuno-suppressent. In Canada, the manufacturer has already withdrawn the 250 mg tabs and we are stuck having to swallow the horse pills (500 mg). So far I haven't been able to manage with just azathioprine. I seem to require the combination to really see a reduction in symptoms. If I can't get it anymore, I'm afraid my next choice will be to step up to the biologics, something I'd prefer not to have to do.
Belleenstein:

30+ years living with Crohn's.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/23/2008 6:33 AM (GMT -7)   
All I take is Asacol for my Crohns. And I like Fitzy know if I miss my medicine, I will feel worse. So I personally don't agree with their thoughts on the 5-ASA meds. I also have a co-worker who only takes Pentasa to control his Crohns.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 4/23/2008 11:59 AM (GMT -7)   
My GI doesn't believe Pentasa works for Crohn's and has been telling me that for a couple of years. I never know what to believe because you hear so many different things. I didn't want to believe him because I like the fact that Pentasa has less side effects than Imuran and the biologicals. I'd like to read those studies. I need to do some research to decide what medication to take post-resection.
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Currently on Humira and Entocort.


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 4/23/2008 4:32 PM (GMT -7)   
no way can i get my hands on this data. you'd have to be an MD. best chance is to ask your own doctor. sorry.

when i said i didnt think of the drugs was working, they said ok let's try this other one. the only real difference is the delivery mechanism and binders and fillers cos they all have the same active ingredient.

let me restate one point: the docs stated that it is no better than a placebo effect, but that does not mean that some people wont benefit from taking it and are legitimately receiving treatment and relief from it.
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


Mike W
Regular Member


Date Joined Aug 2006
Total Posts : 89
   Posted 4/23/2008 6:20 PM (GMT -7)   
All published peer-reviewed literature is available to the public, thankfully MD's don't have a monopoly on knowledge.
Diagnosed in 1999.
No surgeries.

Age : 31

Currently on 75mg 6mp and probiotics.


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 4/23/2008 6:38 PM (GMT -7)   
I heard the same thing at the Chicago CCFA conference. The GI at the conference did say they can work with some CD people if the disease is more in the colon.

Personally they don't seem to help me either and it makes no difference if I miss one. BUT they do have other benefits, like reducing the long-term risk of cancer. I think there are other side benefits too. Not that it necessarily makes up for the cost and annoyance of so many pills. But that is keeping me from stopping for now.
Currently in remission!


KarinB.
Regular Member


Date Joined Jan 2005
Total Posts : 43
   Posted 4/23/2008 8:13 PM (GMT -7)   
I have used mesalamine rectal suspension enemas (a.k.a. Rowasa) for over 20 years and they actually work great for me.  If I get a little flare-up with blood, the Rowasa gets rid of it.  However, I took a food sensitivity blood test and discovered that I was intolerant to different foods and dairy products.  Ever since I cut out milk products and derivatives, I've had no blood!  That was over five years ago.  Try an elimination diet or getting a blood test.  It could be your answer.
 
k.crohnny

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 4/24/2008 4:13 PM (GMT -7)   
I believe I read the studies about the 5-ASA not being effective for Crohn's in one of the articles on the following website:
 

I spend a lot of money on my Pentasa, and worry A LOT about whether it actually helps. Crohn's is a disease that can go in and out of remission on its own, so it gets very confusing. I seem to be slowly getting better, so I'm not ready to move on to the immuno-suppressives, but it does make me wonder all the time if I'm doing the right thing!
 
[*I just activated the link - C2]

Post Edited By Moderator (CrohnieToo) : 4/26/2008 8:18:41 AM (GMT-6)


brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 4/25/2008 1:51 AM (GMT -7)   
I was on Pentasa for the last year or so. My doctor finally let me stop taking it because it wasn't making a darn bit of difference. I really noticed it when I went off of Entocort for a couple months and Pentasa was really the only medicine I was taking for the Crohn's. It was almost as if I wasn't taking a thing. And before I started the Entocort again my doctor ran some blood work and my c-reactive protein was way up. So I really think, at least for me, that it was just like taking a placebo. But I'm guessing it probably depends on where the disease is located. Heck if I really know.

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 4/25/2008 6:00 AM (GMT -7)   
As I understand it the 5ASA drugs are topical anti-inflammatories and work better in the colon than in the small bowel. Since most Crohns patients have primarily (or at least commonly) small bowel involvement, even when they have clear inflammation and ulcerations in the colon, using 5ASA for Crohns is basically only treating the bottom half of the diseased area and doesn't do a lot for symptoms. It has also been explained to me that the 5ASA drugs tend to "turn on" through some interaction with normal bowel bacterial flora, which live primarily in the colon. Hence these drugs really aren't going active at the levels you would want until they pass through the terminal ileum into the cecum. Hence, the feeling by many GIs that they simply aren't very effective in Crohns unless the disease is pretty much confined to the colon.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/25/2008 6:07 AM (GMT -7)   
Well I have my Crohns in the usual TI/Cecum area and before my resections I took Pentasa with success. After my resections the only med I take is Asacol and it works great for me.

So I think its a case that it works for some and others it doesn't. But I don't think its fair to classify all 5ASA drugs as no good for Crohns patients. Just like diet, I think its individual based. JMHO
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 4/25/2008 6:52 AM (GMT -7)   
I have read the clinical studies on this subject. The placebo-controlled studies of mesalamine/5-ASA drugs in inducing and/or maintaining remission from Crohn’s have had mixed results, but the majority have found that they are no more effective than a placebo. Many doctors continue to prescribe them anyway because they are relatively safe drugs and the occasional person with Crohn’s seems to do quite well on them.

Someone asked whether they might be “unapproved” by the FDA. This is not an issue, because they were never approved by the FDA for use in Crohn’s disease. They were approved for use in ulcerative colitis and can only be marketed for that use, but doctors can prescribe them for any use (this is called off-label prescribing).

Off label use of drugs is a very common thing. Many drugs are approved for one use, and are then found to be useful for other conditions. Sometimes a company will go ahead and applied to the FDA for an additional indication for its drug. But often they don’t bother, because it is very expensive to do additional studies and go through the application process, especially if it’s not clear if the drug will be effective.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/25/2008 7:03 AM (GMT -7)   
Interesting Writer - I'm glad it won't be "unapproved". However, I was under the impression that a lot of insurance companies will not pay for off label use. Mine has never questioned my pentasa rx. Also, I was under the impression that Asacol was marketed to Crohns patients. I could be wrong. I know Pentasa is marketed for UC.
26 Year old married female law student.  Diagnosed w/ CD 3 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 alos take a birth control pill to allow some fun in my life.
 
 


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 4/25/2008 7:54 AM (GMT -7)   
Fitzy,

Off-label use is a sticky issue. For practical reasons, most insurance companies will pay for generally accepted off-label uses. Otherwise many patients would be left without coverage for their medications. For example, neither 6-MP nor Imuran has ever been approved for use in Crohn's. (And if anyone's been marketing Asacol to people with Crohn's, they're going to be in trouble soon with the FDA. It only carries an ulcerative colitis indication.)

Generally insurance companies reject coverage for off-label indications when a drug is very expensive, and there is no clinical trial data proving that the proposed off-label use is effective, or proving that it is significantly more effective than using an approved drug.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 4/26/2008 7:25 AM (GMT -7)   
Well, Pentasa "ain't" cheap!!! However, I will say unequivocally that Pentasa has worked for my small intestine only Crohn's disease for the last 10 years. Matter of fact, it seemed to work for the first 4 years all by itself. Then in 2003 when "we" found a small area of inflammation "we" added Imuran. The combination has done well for 4 of the last 6 years. Like a d*mn fool I finally quit taking the Pentasa last 2 years and when I would encounter some mild symptoms I would half-heartedly start the Pentasa again, but the "habit" had been broken and it was hard to down 16 of them a day so I either took just 8 or none. Mostly none. And .... it was a mistake. I now have a high grade partial obstruction and a surgical recommendation. And my Crohn's is still confined to the small intestine.
 
Thank God, I've been one of the lucky ones Pentasa DOES work for!


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 4/26/2008 8:29:54 AM (GMT-6)


JaSanne
Veteran Member


Date Joined Oct 2006
Total Posts : 2033
   Posted 4/26/2008 4:39 PM (GMT -7)   
I stopped Asacol last year after an eleven year stint of it. I was having symptoms that turned out to be side effects of the drug, so I'm better off without it. I really don't know if it ever worked on me. My disease is mostly in the colon.

This information came out a while ago as I know I've read it somewhere, possibly at the CCFA site.

It so hard to know what to do when it comes to this disease.
48 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 4/26/2008 7:56 PM (GMT -7)   
I find it really interesting that there is all this talk about the ineffectiveness of 5-ASA's recently. How long have salofalk and pentasa been on the market? I'm thinking since around 1986-88? Is it possible that they are getting close to the end of their patent protection?
Belleenstein:

30+ years living with Crohn's.


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 4/27/2008 6:22 PM (GMT -7)   
belleenstein said...
I find it really interesting that there is all this talk about the ineffectiveness of 5-ASA's recently. How long have salofalk and pentasa been on the market? I'm thinking since around 1986-88? Is it possible that they are getting close to the end of their patent protection.
 
Interesting theory, and plausible. Patent protection for drugs is indeed 20 years.
 
I seem to recall reading a while back that one of the main benefits of taking 5-ASA drugs was to prevent colon cancer, which Crohnies are susectible to.
 
Sorry to all that I haven´t been active in this forum for awhile, but I´ve been traveling and not always able to get online.
 
all the best,
Robert, currently in Costa Rica
 


Crohn's since 1988
3 resections

Post Edited (ozonehole) : 4/27/2008 7:25:26 PM (GMT-6)


Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 4/27/2008 6:50 PM (GMT -7)   
I was on asacol 2x3a day and entcort 1x3 a day. I slowly stopped both it was before I was dx with crohn's and I was going 10-15 times a day and I hurt all over my body. When the doctor asked me why I quit, I said I didn't have anything. He said I had crohn's and put me back on the same dose.In just a few days I started to feel better. So for me it helps.




Ne Ne

CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 4/27/2008 7:33 PM (GMT -7)   
Neither Pentasa nor Lialda had any effect on my CD. I honestly don't know why I'm still wasting money on the Pentasa.

Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Pentasa 4 gm/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.

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