Does pentasa/asacol really work?

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Christy

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So .... I my doc, today, without going into all sorts of details and whatevers ~ he basically said to me that he did not believe, based upon the newest findings and research that he has read and heard about, that pentasa/asacol/any of the drugs in the mesalamine family have any effect at all on Crohn's disease. :confused2:

Any of y'all have any comment? I know that many of you have been/currently are taking these drugs; the expense is hideous, and if they TRULY are useless .. hmmmm .... well, I just thought I'd mention and see if anyone has a personal opinion about this.

Thanx! :)
 
I don't know how it works for everyone else, but Asacol has been very effective in calming my symptoms and with no side effects for me. After a few years I had a flare and ended up on Imuran, but I'm still taking the Asacol and sometimes double up the dose when I'm having a bad time
 
I was on asacol initially, but it literally just passed through me untouched. My symptoms worsened if anything so i have no doubt it was doing absolutely nothing for me, however perhaps if i had the condition under control then it may have. I'm currently on pentasa but along with prednisolone which helped initially but i feel worse as the dosage decreases and as the pentasa doseage has stayed the same, i assume it too is doing very little. But as i say it perhaps works better as a 'keep in remission' rather than 'get in remission'.

Everyone is different though, so it is quite hard to know what to do!
 
I would remember that they are primarily maintenance drugs. My GI said they will not stop of flare but may help you stay in remission.
 
Not sure what your doc might have meant by 'no effect on Crohn's'. If he meant doesn't cure it or put into remission, that could be correct. Although I used only asacol for flares for the first 8 years of Crohn's and it worked every time, including a 5 year period without symptoms. I'm taking it now as a maintenance drug to keep inflammation at bay.

Lilly
 
I tried to cut back a couple a weeks ago, on Pentassa and I am fighting the beginning of a flare...Arg! Either that or to much "fun" and stress? I don't know...BUt, my bottom really is hurting and urgency and cramping...Yada Yada...Thats what I get for talking like I am getting better!!! Rrrr!!!! Sue
 
my doc tried to get me into remission using those drugs some of them work some of them dont i didn't think pentasa did anything for me
 
Neither of them helped me very much. All it did help was me taking more pills! Anyway, I'm sure it's one of those YMMV things.
 
I believe those work better for people who are experiencing mild symptoms.
Sulfasalazine was the first drug that I was on, and it did keep me in remission for quite some time. (I don't remember if I was on pred when I started it, but that would make sense as it kicked me into remission pretty quickly.)

I had to switch off of sulfasalazine for breastfeeding, and switched to asacol. That also worked for quite some time. When that started failing me, I moved to pentasa, which worked pretty well. I do think I paired it with prednisone again to start it off though.

Pentasa eventually started failing me, and I had to move into the Humira and Remicade level of drugs. For some reason, I am still on pentasa with Remicade, but I have no idea if it is helping me or not. (The remi is)

So yeah, long story short - I wouldn't say that it does nothing. It all depends on the person.
 
I am currently taking Lialda, and though I am not symptom free, I do think it is helping. I am now only going to the bathroom once daily and with less mucus and urgency. I still do have mild abdominal pain, but I wonder what it would be like without taking Lialda.
 
I'm taking Pentasa for my severe Crohn's. (was just diagnosed in Aug this year and my dr put me on Entocort first) I really feel that I am more 'normal' than I've ever been, less gassy and less trips to the bathroom! No side effects either. My dr wanted to try this before 6MP and I'm glad I did. We're going to stick with this for awhile unless I have more troubles.
 
I'm getting worried...I stayed home yesterday and worked from home. Layed low, and today..my bum is starting to hurt more and urgency is up. I'm on 6mp, and never deviated from it...I was a little lax in the pentassa...But never on the 6mp...I started using my corisone enemas...I'm getting nervous...I hate this... :( Sue
 
Hey sue! sorry to hear that you have been experiencing pain, but one thing i can tell you is that i was taking a ton of Pentasa, and felt it was doing nothing. shockingly after i stopped taking it alot of my symptoms actually got better, i think its different with everyone, but i personally did not find it useful, never tried 6MP though.
 
Asacol made me worse, and of the few people I know irl with crohn's, none of them saw any effect.

Useless in my opinion. Not a doctor though :p
 
Sue-2009 said:
I'm getting worried...I stayed home yesterday and worked from home. Layed low, and today..my bum is starting to hurt more and urgency is up. I'm on 6mp, and never deviated from it...I was a little lax in the pentassa...But never on the 6mp...I started using my corisone enemas...I'm getting nervous...I hate this... :( Sue
Click to expand...

Sue - could you possibly be getting an abcess or fissure?...on top of increased urgency?.....or is the soreness related directly to the increased visits to the loo?
 
I was on Asacol for years but it had no effect on my Crohns. I think it is primarily indicated/prescribed for Crohns in the large bowel. I got fed up with taking it in the end so stopped with no ill effects. Not sure if there is research to support their use, guess its an individual thing - some people might respon others will not.
Best wishes
 
Not sure...whats going on down there...I think that it is from urgencies..and lots of bms...I feel a little better...Hate to even say it and jinx myself...I have been using the cortisone enemas..am going to get the lidacaine suppositories...Hopefully it was the holidays, stress, eating, drining...and I hope and pray it settles down...Thanks tons you guys...Your support means alot to me--the major worrier! :) Sue
 
A few years ago, I decided to see if Pentasa made a difference for me. I went off of it for a few days. I did notice that I had more burning and pain. I still flare, so when that happens, I need to take more than the Pentasa (Prednisone, Entocort).
 
I was on Pentasa and Asacol at the same time and I dont think it did anything for me. I thought I was feeling worse when I was on them. Apparently I am not the only one (good to know). The best I felt was when I was taking no medication and just monitoring my diet. Unfortunately it did not work well enough as I am scheduled to go for my first strictureplasty next week along with colon stretching, OUCH!!!
 
Here is the story I received from my new GI just yesterday.

Asacol and Pentasa are on the bottom of the totem pole med wise. They have relatively no side effects (note: relatively) so there for are quite safe. Now, they also may only help a minute amount.

I started taking Asacol yesterday, not the first time around for me, and have been experiencing slightly increased nausea.

The research I have done indicates that these are not the drugs to help you into remission but to help keep a flare from happening. As I have never achieve remission I am reserving judgement.

Hope you feel better.

Good luck,
Michele
 
I am on Lialda and it worked well after I tapered off of Pred in April or so. Now every once in a while I get some D, I guess a mini flare and I double the dose to 4 pills and it clears it up. I go for a few days and then back to two.

So I think it helps some but I am thinking of asking my doctor for Humira
 
I was on an Asacol/6mp regimen when I was initially diagnosed with Crohn's 6 years ago. When my symptoms persisted, my doctor continued to up the amount of Asacol I took until I was taking 8 pills a day. Eventually it took my getting started on Remicade to control my symptoms.

After meeting with one of the top gastroenterologists at Cleveland Clinic a couple of years ago, he assured me that Asacol does little to nothing for Crohn's Disease, and that it was essentially a waste of time in my treatment.
 
I found Pentasa to be hopeless.I ended up with another resection.
It did nothing for me to stop the CD going from mild > severe.
 
The GI said that in Matt's case Mesasal (Pentasa/Asacol) would be of no benefit to him as his CD is isolated to ileum. He said it is only useful if there is large bowel involvement.

Dusty. :)
 
Yes, it has worked for me in the past, still tapering off steroids...from SEPT 2010 to see if it will work this time..might have to go on Imuran though don't know yet and have to wait til March to find out. As for the past, yeah it worked, I have been taking the highest dose you should take per day since 2006. I hope it continues to work so I don't have to go on imuran or other drugs.
 
I just read the following on http://www.ccfa.org/info/diet

"Some IBD therapies -- especially the 5-ASA medications (e.g., Asacol,® Pentasa®) -- cause interference with the absorption of folate, which is essential in helping to prevent cancer and birth defects, so it should be taken in supplement form."
 
ive been on asacol for the 4years ive been diagnosed and i asked the gi nurse and she said it showed that it helped keep the inflammation down and cramps which i havent had any off,the differance between asacol and pentasa i was told is because asacol has the coating it works fruther down the bowel before it dissolves whereas pentasa just starts to dissolve straight away,im now on asacol enemas as they say the infection is right at the bottom of my bowel,colon,so i'll see how i go with these too.
 
I have been on asacol for a while and feel great. i take it 800mg 3x a day with good probiotic, greens based strong multivitamin ,fish oil, iron , excersise, and complete diet. It can work well if you take it as directed and live a healthy lifestyle. You can't expect good results if you dont put the effort in on your side as well.
 
You might have to experiment a little. I've been on both Asacol and Pentasa, and the Pentasa works better for me, though I've heard the opposite with others.
 
I went on asacol when I was first diagnosed and either that or the prednisone helped stop the embarrassing symptoms, but then I went off asacol for a few days (my dr and I thought it wasn't doing anything) and within a day or two, the only way I can explain it is it felt like my colon had frostbite..or when a nerve in your tooth is exposed... so I went back on it and now my colon has it's snuggly warm blanket back...

Sorry my descriptions are weird.
 
I've been on Pentasa since my diagnosis and as long as I'm diligent about taking all my doses I'm okay. I'm still susceptible to trigger foods and have mild cramping with diarrhea but my blood work is fine so.....

However, if I get reckless with my dosing within 48 hours I'm having all-day diarrhea and more significant cramping, although still not even bad enough to break into my narcotics.

Personally it seems to be working for me.
 
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I used to take Asacol and never had any problems with it and it did seem to help but I never took it alone. I also took and now I only take 50mg of 6MP.
 
I have Crohn's and I was on pentasa for around 4 years and had two of the worst flare ups of my life. later got told that it is practically "strong paracetamol" :/. My mum has unlcerative colitis and is on Asacol and it seems to work okay. We are both on Azathioprine though and it's amazing. Having a slight flare up at the moment but I've been in remission for six years on azathioprine and my mum seeing the results for me really pressured her doctor into taking her off a long term, low dose of steroids and onto azathiprine and she has also experienced a remission.
:)
 
I have been diagnosed with Crohn's for several years now. The initial treatment was with Asacol for a few months. I developed a nasty rash with burning sensation pretty much all over my body, which A&E could only identify as an 'allergic reaction'. I was prescribed prednisolone until I told the doctor that I was already on 30mg of it so they couldn't give me any more. I stopped taking the Asacol and completed the steroid course and the rash slowly subsided over a few days, clearing up fully after maybe 2-3 weeks. At the next consultation I was aksed to try Pentasa which very quickly within a few days produced the same effect (I was not taking prednisolone this time) although not as severe because I immediately stopped taking it.

Unfortunately, in my case neither the Asacol nor Pentasa made any real difference to my condition, but apparently did cause me an uncomfortable side effect.
 
Ive been on Asacol for over a year . It has helped reduce my symptoms which were at the time, LRQ pain , bleeding , a lot of D with mucus.
A few thing s i noticed on Asacol . It did take about three to four weeks to be a constant help. Bowel movement completely changed to more manageable and not as frequent.
Bleeding stopped completely and only returned when i backed off as I thought I was cured ( silly me).
As time as moved on I have developed other symptoms such as blisters in my mouth , sore eyes. Painfull joints and headaches.
Some of these I would say are caused by the Asacol , particularly the sore joints.
The Asacol works as it is its casing is disolved at a ph of 7 . This is the acidic level at ceratin parts of your digestive tract. In particular the Terminal Ilieum( the joint where your small intestine joins the large colon) and the anus ( we all know where that is )
The Asacol is mainly used to treat inflammation in the Large Bowel or Colon. Its a management drug used primarily to treat mild Inflammation. It appears to work better for some rather than everybody , but then IBD has many forms and can be sporadic in its appearance in the digestive tract ( anywhere from the mouth to the anus )
It does certainly have its uses in the treatment of IBD.
Peter
 
When I was diagnosed I was put on Pentasa instantly and was in remission for two years. After my surgery, I was still on nothing but Pentasa - again, had another two years of remission ;)
Now I take it with Azathioprine, but I think it still helps so am wary to stop.
 
I'm confused. I was diagnosed with Crohn's last fall. My doctor put me on Asacol - which is clearly prescribed for UC, according to the Asacol manufacturers ... but it's been working very well for me. After being on it for 6 weeks (along with a low residue diet), all of my horrible symptoms went away.

Some people and some doctors say it doesn't work, it's no good...... so then why are all my symptoms gone???????????? Very confusing info about Asacol. I don't get it. BUT....... I'm VERY HAPPY to have my symptoms gone! But does that mean I'm in remission? I don't know..........
 
My very early opinion on whether these drugs work is yes, at least in some cases.

I was recently diagnosed (back in January) with a case of Crohn's that is somewhere in the mild to moderate range (I have gotten different descriptions from different doctors), but it is quite widespread, with mild inflammation and shallow ulcerations in the duodenum, terminal ileum, sigmoid colon, and rectum. I was put on Pentasa about a week ago and have already noticed some improvements. I'm down from 2-4 BM/day to 1-2 (actually, 1 every day except for today, when it was 2). The bloating and voluminous (not to mention foul-smelling) gas have almost completely disappeared (my wife is so happy). I still have some mild abdominal discomfort that is best described as a dull ache off and on, but after 5 days on this drug, I've already seen improvements.

Now, if only this Pentasa could also be a miracle fistula cure...
 
I'm very happy to hear that you're doing well already on Pentasa, Mike. That's great and I hope it continues!! Sounds like you're getting some nice results in a very short period of time! :)

I'm thinking these meds do infact work for *some* people, because why else would the gastroenterologists recommend it all these years, and still do? My Crohn's was diagnosed as 'mild' too. Maybe that's why Asacol is working for me... I don't know.
 
I am now on 6mp and Asacol. I used to be on Pentasa but it did absolutely nothing me. I do believe that the 6mp is my most important drug for my Crohn's Disease. However, for me personally, Asacol seems to help keep me regular. If I am having an issue with constipation, I will increase my Asacol dosage.
 

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