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Dr. said to stop Pentasa

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Crohn's Disease
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Posted 5/10/2013 3:03 AM (GMT 0)
I was wondering if anybody has been told by their doctor to stop pentasa?  My daughter has been on it for 10 years, but now she is being told to stop it.  He said it is not as helpful as they once thought it was.  She is only taking pentasa and has used entocourt a couple of times for her flairs.  Does this mean no maintenance drugs?  He said we will discuss it further after her scope next month.  Thanks
Posted 5/10/2013 3:33 AM (GMT 0)
My doctor said the same. I stayed on entocort and azathioprine.
I think you're drs right, I think it's only proven effective in a specific area of the colon, the small intestine I think. I'm sure someone else can be more specific for you.
I would however push for some kind of maintenance drugs.
Posted 5/10/2013 11:56 AM (GMT 0)
The research seems to indicate that the 5ASA drugs, which includes Pentasa is not showing to be any more effective than placebo for Crohn's but is more helpful with UC. My doc still has me on Pentasa anyway, but I seem to get in a flare every year, so he may be changing that plan. It does seem like the medical thinking is changing and I've heard more stories of docs using nothing with mild Crohn's but closer monitoring instead. This is a tough disease and while we have no cure, I think the dominant medical thinking keeps changing all the time.
Posted 5/10/2013 12:18 PM (GMT 0)
I have been in complete remission for 6 years after having two massive rectal fistulas and diagnosed with CD in the lower rectum.  I take 1000 mg pentassa 3 times a day, and I also follow the SCD diet.  I have not had a flare or symptom since 2007 when my fistulas healed up.  Is it the pentassa or the SCD diet or the combination of both that is keeping me in remission?  I don't know.   Since my insurnance picks up the tab for 90% of the pentassa each month, and since there are no side affects from taking this drug, I am going to continue with it as long as I can afford it. 
Posted 5/10/2013 5:46 PM (GMT 0)
I have read pretty much the same information as what gumby notes. Pentasa is released so far along the intestinal tract that it is not useful to most Crohnies, although it may be useful to those with UC and those with Crohn's colitis. Personally, I have never noticed any benefit from it (my Crohn's is primarily located in the terminal ileum), but I tolerate it well, which is more than I can say for most meds, so I feel like my docs have put me on it "just in case" it has any benefit.
Posted 5/10/2013 6:12 PM (GMT 0)
I am not a doctor and I am not up-to-date on all the latest studies. With the caveats of my limited understanding of all this, my impression was that the efficiacy of Pentasa was less than that of the biologics and the immunosuppressants. But not that it was zero. That more and more doctors are switching to a biologics as the first course. Perhaps some doctors are missing that the Pentasa's of the world may still be of benefit to some patients.

When I was on Pentasa, I did have periods of not taking it. I could always feel the positive differences when I started up again. (I have it in the terminal ileum.)
Posted 5/11/2013 12:09 AM (GMT 0)
Correct - mesalamine drugs are falling out of favor for Crohn's since they act on mucosa and CD is a transmural disease involving all layers of the bowel. Recent studies are showing it's no better than placebo. Some doctors continue to use it for very mild Crohn's but even for that I think it does more harm than good. There is a small percentage of people who actually get blood diarrhea because of mesalamine. I was taking sulfasalazine for about a year and was having lots of bleeding/mucus while on it. about a week ago I stopped the medication on whim and feel dramatically better. It may be a coincidence but I doubt it.
Posted 5/12/2013 4:40 AM (GMT 0)
I have been on Pentasa for years and now that I am experiencing my first real problems I am told to take laxatives and given Prednisone which is making me lose my mind. I wonder if it was never really needed in the first place. I do have problems in my small intestine, which is why he said he prescribed it, but I was never typically symptomatic before being diagnosed or put on the Pentasa. So is it helping? My guess is probably not, and I am gearing up to push my GI guy for a little more than, here take these laxatives every day, or take this med that will make you physically ill and lose your mind (prednisone).....sometimes we all need a second opinion or 5 more minutes to say, hey this is not working. Intimidating to some of us but we know how we feel....and I swear if he tells me my pain is supposed to be on the other side of my abdomen one more time I will search the state for another doc who takes medicaid. rolleyes
Posted 5/12/2013 11:28 PM (GMT 0)
I say if it working or even appears to be working, I would leave well enough alone.
Posted 5/13/2013 12:57 AM (GMT 0)

2much2handle said...
l....and I swear if he tells me my pain is supposed to be on the other side of my abdomen one more time I will search the state for another doc who takes medicaid. rolleyes

Pretty sure I've read somewhere that it doesn't matter where you actually feel the abdominal pain it could be originating from any part of the intestine in that area... But thats been a while ago and I could be mis-remembering...

I've been on Pentasa and Imuran for a while now and been doing pretty well.. Quick flare/obstruction put me in the hospital a few weeks ago so I went back on the pred taper and visited with my doc. Humira has come up before and I always wanted to hold off on the biologics because I feel they are the last line before surgery. I was gonna hold that stance but after reading this maybe its worth switching from Pentasa to Humira sooner rather than later?
Posted 5/13/2013 6:51 PM (GMT 0)
My mom started Pentasa when it first came out for CD and it was a wonder working drug for her for many many years.  She has since had colostomy surgery and the doctors say it is not longer effective - she takes 6MP. 

I too took Pentasa for years.  My doctor said it was not as effective after surgery, when I was put on 6MP.  I experimented and came off it and I could tell a difference so I went back on it.  Several years later I again went off it as an experiment and I could not tell a difference so I no longer take it.  Both times my doctor knew of my experiments and said it was worth a try - he felt like if it was working for me I should stay on it, but if not he did not have  a problem of me coming off it.

Posted 5/13/2013 7:30 PM (GMT 0)
I was diagnosed in 1990, and put on Pentasa around 1991 or 1992.  Considering I only have a major flare up every 11 years, I am good with taking the Pentasa.  I may just be lucky or it may be the Pentasa, but with little side effects I am not taking the chance of going off of it for the more costly and possible more side effect meds (note I am also in the health insurance industry and am very cynical when "new/updated" research shows that the cheaper meds don't work).

I can say that I took some "medication vacations" from Pentasa--honestly I know I had some rougher days when I did that and have been more "stable" when taking it regularly.  Thanks for the reminder to take my pills!

 

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