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My pentasa story…do you take it?

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Crohn's Disease
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Posted 12/14/2023 9:04 PM (GMT 0)
I have had crohns for 25 years. I have been on pentasa since day 1 and have always done well…no surgeries…only two hospitalizations, one of which was when I was diagnosed, one when I had fevers. Have had treatment all these years and have not had any significant problems. My most recent updated colonoscopy was last summer. Couldn’t reach the small bowel area where my crohns is because of narrowing and scarring, same thing happened on my very first colonoscopy 25 years ago. Got an m.r.I. Last week and the new doctor I am seeing closer to home says I have mild chronic crohns in a 4 inch area, can’t tell if inflammation is new or from being chronic, and because data shows pentasa doesn’t work, he suggested I stop taking anything and just be monitored and let him know if I have troubles. He said he can’t advise stronger meds because of my mild case. At my age of 72 I don’t want to now start taking chances and just winging it with nothing. He did send in a new refill of pentasa, but said that he shouldn’t because as a physician he doesn’t want to provide me with something that doesn’t work. don’t feel real good about this conclusion…what do you think?
Posted 12/15/2023 12:06 AM (GMT 0)
He's right that the data shows very little or no benefit of pentasa (or any other mesalamine medications) in the treatment of Crohn's disease. You have probably done fairly well because your Crohn's is mild, not because you have been on Pentasa all this time. Most people who have mild Crohn's and do well on mesalamines like Pentasa would do equally well not on anything. There might be rare patients where it does actually help some, but the odds of that are quite low (1 in 20 or 1 in 30 maybe?).

So it's *probably* not providing any benefit for you. Is it costly/expensive to you? If so, that plus the data is reason enough to stop it. On the other hand, If you're getting it cheap, and it's not causing any side effects, there's probably no harm in continuing.

If it's expensive but you want to stay on something, maybe a generic mesalamine would be cheaper for you?

So I'd recommend either stopping it or getting on a cheap mesalamine if you're uncomfortable stopping it entirely.
Posted 12/15/2023 12:19 AM (GMT 0)
You've done extremely well considering you were essentially unmedicated. As mentioned, Pentasa is totally ineffective as an IBD treatment. Since you don't seem to be having major issues outside of the small area you describe, I would think that you should consider a resection over more sophisticated meds.
Posted 12/16/2023 12:30 AM (GMT 0)
Thanks for your replies. Don’t understand why up until yesterday previous doctors refilled my pentasa prescription after every yearly visit for years with no further explanation. Who is to know if I have done so well because I have taken it all this time. And another puzzle is if it is useless why is it a drug my insurance pays for? My doctor recommended no other medication at this time for my mild crohns, only monitoring, but I would never in a million years choose surgery I am still just trying to sort it all out. There is a nationwide back order/shortage on the generic mesalamine…but I am able to get pentasa from my pharmacy. None of it is cheap. I have a months supply and will decide what to do in the meantime.

Post Edited (ragbag) : 12/15/2023 4:36:19 PM (GMT-8)

Posted 12/16/2023 4:10 AM (GMT 0)
Pentasa - just like any other mesalamine - was never approved for Crohn's disease at all. The mesalamines were FDA approved for mild to moderate ulcerative colitis. Based on that, many gastroenterologists assumed it would probably work for mild Crohn's as well. They are allowed to prescribe it for "off label" use. But the studies done on it for treating Crohn's have never shown a clear benefit. As more and more data has come in, the more it has become clear that it's just not a helpful treatment. Still, some doctors prescribe it, and some patients take it.

Personally, I certainly wouldn't take it if it was expensive. That, plus the odds that it's not doing any good, would be enough for me to recommend stopping it.
Posted 12/17/2023 6:00 AM (GMT 0)
Pentasa made me pee like 15 times a day. It did nothing for my for Crohn's if anything it made it worse. After I went off of it for good I still had to pee 15 times a day. Twenty years later in 2020 I took boswellia for Crohn's and by some miracle it after 3 months I pee 3 times a day. I've been off boswellia for years and I still pee 3 times a day.
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