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Pentasa Ineffective??

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Crohn's Disease
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Posted 9/11/2009 3:41 PM (GMT 0)
Hi Everyone!

I haven't posted in quite some time but look to this board for comfort and information on a fairly regular basis.

So here's the scoop. I was diagnosed about 12 years ago with Crohns of the terminal ileum. Somewhere along the way I was prescribed Pentasa for this condition. I've been taking Pentasa for at least 5-6 years. Recently I started with a new Gastro who is fairly young and seemingly up to speed with the latest maintenance drugs for Crohns.
He told me that it's been determined that Pentasa is ineffective for the treatment of Crohns. He said to just stop taking it.

Has anyone else heard this?

Of course being at the doctor's office and not expecting this little tid bit of info I didn't ask alot of questions or take notes at the moment.

I don't recall hearing anything about this and previous doctors were full aware that I was on Pentasa and never said to stop.

I do have to say that I don't feel any worse by not taking it and I've been off it for over a week.

JB

Posted 9/11/2009 4:12 PM (GMT 0)
Seems like you hear this more and more about Pentasa. I don't think it has worked for my daughter as she suffered from considerable inflammation while taking Pentasa for 2 years. We had a specialist tell us that Pentasa is like a topical drug, only treating the surface inflammation, like putting ointment on open wounds.  Although I'm sure you'll find many people that have had success with Pentasa (here). Everyone seems to respond differently to alot of these drugs, which is why it's so hard to decide on a particular treatment plan. 

Tom.

Posted 9/11/2009 4:18 PM (GMT 0)
Well I am on the sister med Asacol and I can tell you it has kept me in my remission for the past 4 1/2 years. I bet if you stopped taking the Pentasa you will flare within time. Many others thought that it wasn't doing anything when in reality it is working, and months down the road started flaring. Maybe you have been doing so good for the past few years because of the Pentasa. I hope that you do get on another maintainence med instead if you aren't taking the Pentasa any longer. You still need to keep the microscopic inflammation in check. Good luck!
Posted 9/11/2009 4:21 PM (GMT 0)
I used to take it and was taking like 12 or 16 pills a day or something ridiculous and it didn't help me any.  My GI at the time said you had to take so many because most of it never makes it to the right place in your intestines or wherever it's going.  I ended up stopping it because I noticed no benefit at all.

Posted 9/11/2009 4:40 PM (GMT 0)
It seems like if it's been working for you for the past 5-6 years, I would stick with it.  If it hasn't been working for you and you're suffering from symtoms, then I would switch.   I don't readily trust doctors and I think it's wrong advice if you've been symptom free to switch you to a different drug.  The other question is how much are these drug companies with the "latest maintenance drugs" paying this guy.  You really have to be your own advocate and question everything.  That being said, I think (I hope) Pentasa is effective for people with mild cases.  My doctor is young as well and has put my son on Pentasa since he has a mild case.  He has crohn's in the terminal ileum but his symptoms are mild.  We would rather try a conservative route than go with the "big guns" so to speak and affect his immune system.  We are also using cod liver fish oil, glumatine powder, probiotics, and multi-vitamins with a low residue diet.  So far so good.  Those other maintenance drugs are there if we need them.  My hope is that we never have to use them.  I hope we can stick with Pentasa.
Posted 9/11/2009 11:37 PM (GMT 0)
I took Pentasa for 5 years. While on it, I developed a stricture of the terminal ileum that narrowed a foot of intestine to half its width. My new GI doctor told me that obviously the Pentasa was ineffective, and he switched me to 6MP. Within a very short time, a SBFT series indicated that the stricture was completely gone (with meant that, luckily, it had been composed of inflammation and edema, rather than of scar tissue). So I'm not a big fan of Pentasa, although I recognize that it may work for some people.
Posted 9/12/2009 12:40 AM (GMT 0)
I have been hearing this too..i think you need another med in addition to the Pentasa..not that alone..I think Asacol might work better..this actually healed the ulcers in my colon...and i take Pentasa now....and i think about switching back sometimes...i feel like Pentasa..hasn't helped me much either...though i don't think its a good idea to stop taking it...
Posted 9/12/2009 10:34 AM (GMT 0)
I currently take 4 pills 4 times a day and notice a big difference if I miss a dose here and there (especially two in a row...which I do because I'm forgetful). However with that being said, I also know that it isn't enough for me because I still have a lot of break through pain and I feel like my CD has spread further. My GI feels like my terminal ilium may have active ulcers that are causing a lot of my pain. I would say that from my experience, Pentasa may not be the most effective maintenance drug but it does help me.

I would be hesitant to completely stop taking it unless you have started another maintenance medication in its place. I would suggest that you gradually lower your dose and see how you do and if it turns out you don't need it awesome! If it turns out you do...your symptoms shouldn't be as bad because you'll still have some in your system and it'll be easy to pop back up to your regular dose and get symptoms under control.

Just my thoughts. Good luck!!
Posted 9/12/2009 1:44 PM (GMT 0)
My daughter has been taking Pentasa since March 09.  Prednisone put her into immediate remission after her diagnosis. She stayed in remission (altho she never had "great" stools) for most of the summer until the last 3 weeks or so when she began experiencing gas, diarrhea and now some stomach pain again. She is only 9, 72 lb.s and takes 3 of those big blue Pentasa horse pills, 2 x day. At this point, I don't feel they are working since her symptoms are reappearing just as they did last fall before we knew she had Crohn's.  I know what's next...her Doc will want to put her on 6MP.  Personally, I was hoping the omegas, and tons of probiotics would help keep her in remission but so far no luck.
Posted 9/14/2009 3:03 AM (GMT 0)
I too was on Pentasa for several years.  Took 16 of them a day.  Eventually they quit working.  That has seemed to be the trend with all my medications so far.  After so long, I have to move onto something else.  I can only hope they keep making new meds.  Good luck!
Posted 9/14/2009 3:46 AM (GMT 0)
I started on Pentasa ~4+ years ago, switched to Imuran and then switched to Humira. I still ended up with a stricture and needed a resection. I've been taking Pentasa since my resection, ~1 1/2 years ago. My doctor doesn't think much of Pentasa either. If there are any signs that a stricture is forming, I'll probably go back on Humira or start Remicade. But for now, I like taking a pill (8 of them/day) that doesn't mess up my immune system. I think it works for me, at least for the moment. With all the crazy viruses, bacteria roaming around, I get kind of paranoid on the biologicals. If I were you, I'd stay on the Pentasa if you've been feeling relatively well for the past 5-6 years.
Posted 9/14/2009 5:51 AM (GMT 0)
The relevant info on whether pentasa does you any good can be found at the end of this abstract: http://www.ncbi.nlm.nih.gov/pubmed/9352848?dopt=Abstract

Basically, it is most useful for people who have had surgery, disease in the ileum and long-standing disease. For those, the rate of recurrence is reduced up to 20%. Not outstanding, but still useful. For people not fitting into that category, the benefit is about 4.7%, but uncertainty could mean that the benefit is zero - within statistical limits of error.
Posted 9/14/2009 4:27 PM (GMT 0)
Thanks for all the great replies...I just had a moment here before heading out but wanted to reply as well. Even though I've been taking the Pentasa for years I've struggled to stay well. I, like many of you, have been on a roller coaster going on and off the Pred. I've actually been on Entocort for the last year while still taking the Pentasa.
I just wanted to clear up the idea that I've been feeling well. I haven't, I have great days and terrible days just like others on this board. I don't know how much the Pentasa contributed to the great days and since I had to go on and off the Pred I can't say the Pentasa has been a consistent stabilizer.
I really do appreciate the comments and I do feel kind of bad(physically and mentally) about going off the Pentasa cold turkey. I think I may get back on it since I have a few scripts left and take it from there. I don't think it could hurt. Since my Crohns is primarily found in my ileum and that seems to be the the focus of Pentasa...considering what Keeper wrote it makes sense to keep on with the drug.
I sometimes wonder with the additional pain I've been having lately(prior to the discontinuation of Pentasa) that I'm not treating the problem all the way thru. The mention of ulcers in the TI and Colon does make me wonder if I'm having similar problems. I wonder why I'm not on Asacol. Anyway, I know it pays to do homework on this DD and be educated but alot of the time I just want to wave a freakin' wand and just make it go away. Perhaps I need to be a bit more mature and do my homework. G*d I hate this disease.

Thanks for all the replies and any other input is always welcome. I think I will get back on the Pentasa for now until I have more time to put some questions down on paper for the doc.

Thanks y'all!
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