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Pentasa and 5-ASAs as treatment option?

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Crohn's Disease
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Posted 6/20/2014 10:00 PM (GMT 0)
Hey all,

I'm wondering if any of you with Crohn's has tried Pentasa and if so has it worked for you as a maintenance therapy? I have been on budesonide and imuran before but my doctors never tried Pentasa...I'm not sure why. Is it reserved for only "very mild" forms of crohn's, or can it help with serious disease too?

I'm looking for any alternative to the biologics at this point.

Thanks!
Posted 6/20/2014 10:33 PM (GMT 0)
I took Pentasa since my diagnosis in 2007. I didn't have any side effects from it, but I also can't tell you if it helped at all. I ended out with a lot of scar tissue in my ileum, had an obstruction and needed a resection. So I guess it may have protected my colon, or it may not have done anything at all. Research seems to indicate that the 5-ASAs do help UC but especially are no better than placebo for small bowel Crohn's. I'm currently on nothing after the re-section and having a colonoscopy in 6 months. This is on the advice of Dr. Rubin at U of Chicago.
Posted 6/23/2014 4:34 PM (GMT 0)
I have been pentassa combined with the SCD diet and I have not had one flare or symptom from my Cd since 2007 when I was diagnosed.  I take 2000mg three times a day and have never seen a side effect.
Posted 6/23/2014 4:42 PM (GMT 0)
Docs seem to be moving away from the 5ASAs as gumby has said some studies show they are no more effective than placebos.  However, I have been on Pentasa since 1991 or 1992 when they were first most popular as treatments.  I have had very few major flares.  Is it that the Pentasa is working or I am lucky or something else...I don't know, but I have done well and only saw an increase in my hair shedding from the pentasa.  This side effect is pretty much completely removed by taking folic acid and I was shedding before the meds anyway.  I do have scar tissue at my surgical site that may be my current problem (but may not be)...none of the big guns fix scar tissue...so I am sticking with pentasa at this point.  After 24 years I don't know that I would have had scar tissue regardless of any meds.
Posted 6/23/2014 6:18 PM (GMT 0)
I took Asacol for about 9 years and tapered off of it when I lost my insurance. I'm not sure if it was keeping things in check or not because I did about the same off of it.

The main difference, if memory serves, in Pentasa and Asacol is that Pentasa releases higher up in the small intestine and Asacol (I think it's been replaced by a different capsule) was designed to release in the colon. I remember the studies showing its efficacy was that of a placebo, so it probably has fallen out of favor with GIs.

It might be worth a try.
Posted 6/23/2014 7:40 PM (GMT 0)
In 2007, when I was first diagnosed I was put on Pentasa. I stayed on it for 3 years but kept having flare ups and persistent pain. In 2010, I was introduced to pred and pentasa has always been there. Now, I take Entocort, Imuran and Pentasa. It can't stand alone. I don't know whether it has a placebo effect like Gumby has mentioned or not but what I'm sure of is that you can't depend on it only.
Take care :)
Posted 6/24/2014 10:51 PM (GMT 0)
I'd been on Pentasa for about 10 years, after a scope found ulcerations of the colon when they first diagnosed me. Granted there were still occasions while being on the Pentasa, but I never knew how much good it did me until this year when with the implementation of the ACA I lost my internal medicine doc, my gastro, and am no longer allowed the Pentasa as a prescription. I've been off everything for almost 6 months, and I'm finding out that my CD and my AS were being helped greatly by the Pentasa.
Posted 6/25/2014 12:48 AM (GMT 0)
I've been on Pentasa since the beginning. It has worked well for me, and I have had most flair ups (and a resection) when I couldn't afford the meds. I don't have insurance, so I get it from Canadapharmacy and save about $300 a month. I'm a fan.
Posted 6/25/2014 1:55 AM (GMT 0)
I have been on Pentasa 4G /day since my diagnosis in 1996. I had a TI resection in 97 but have had no active disease since. Is it the Pentasa? I don't know and neither does my doc. But he's left me on it because I have no side effects and it may be working despite him agreeing with the literature that it's not likely doing anything. I'd hate to go off of it at this point only to get active disease after all these years and he agrees.
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