Pentasa

 

My husband was speaking to a friend recently. Said friend has had Crohn's for about 30 years and has been taking Pentasa. She told him that during her most recent GI appt., her doc told her that the latest research on Pentasa is that it does nothing to help Crohn's. So he took her off it and is putting her on something else.  Has anyone else heard about this?

I've heard about it, but I still think it comes down to the individual. To me, that is the same as saying 'pentasa works for everyone.'
It's kept me feeling well for almost a year now so I think I'll stick with it. It made things worse initially I will admit, but things went uphill after that.

My GI says that it is true that Pentasa/Salofalk or whatever your version is called, is a maintenance medication and does not "stop" Crohn's. It does not act like Prednisone and reduce active Crohn's. It keeps things under control when they are under control already. Like tamsprote96, I do notice if I miss a couple of doses of the oral medication, but it is usually a couple not one dose. I definitely notice if I miss one dose of the suppository version.

He also told me to keep taking the medication while I am in a flare and using Prednisone so that when I taper off the steroid it will hopefully keep the flare from returning. Like many have stated on this forum, it seems to be essential to keep up these maintenance meds, because we don't know what is happening microscopically inside us, and we can be causing irreparable damage.

Like so much of this DD it is one of those things that is very individual as to what works for one and what doesn't work. I was on Pentasa for many years and it worked well for me, but then it stopped working as well, so I had to switch things up and changed to a different combination of meds. Nanners, one of the moderators, has been maintained on Asacol, a very similar drug, for many years. In the grand scheme of Crohn's medications the 5-ASA's are one of the more mild drugs and so they tend to be one the first line of defense for some doctors. Other doctors like to go with the big guns first. It really is a matter of the doctors approach and what the patient and doctor agree on.

Pentasa's effectiveness depends in large part due to the location of your disease. The coating causes a delayed release, so the logic goes that unless your Crohn's is in the terminal ileum and/or right colon, it will not work. If you look at the printout you get when you get your prescription filled, it's primary purpose is for treating UC and Crohn's is listed under "other conditions it may be used to treat" (or at least that's what the Rite Aid printout that I get says).

I personally am in the Pentasa-doesn't-do-crap-for-me camp, but I take it regardless because I experience no side effects from it.

Recently, I saw two GI specialists/researchers in some of the top programs in the country, both of them sort of reluctantly agreed that among the gastro field they are indeed heading to conclusion that it is an "expensive placebo". The good news they are really big on biologics...they believe that is the way to go...interestingly they have completely given up on finding the cause for CD/UC or finding a cure. The real notion these days is Management. That is they just want to manage it.

Humira (generic name is Adalimunab) is a "Biologic." So is Remicade.

There are two clashing schools of thought: a) start with least toxic but also potentially least effective meds first (mesalamine/antibiotic, etc.) and then, if necessary working up the pyramid toward stronger meds like Imuran and after that, biologics or b) start with strongest possible meds even though the potential for toxicity is greater.

The most fierce proponents of choice "b" tend to be the gastros promoting biologics as first-line therapy.

The following link goes to Johns Hopkins and supplies more info about the pyramid, biologics, and other therapies:

 http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease4&organ=6&disease=21&lang_id=1