is anyone taking pentasa?

I'm finally ready to accept my crohns diagnosis after months of fevers, achy joints and daily D. I had been feeling pretty good for the last few years since my last flare-up. The fevers/joint pain went away a couple of months ago and now I just have once daily Diarrhea and some cramping - lots of gas and bloating. My specialist has put me on 9 Pentasa pills a day (with a script for prednisone in case that doesn't help). I have a small bowel follow through scheduled for Monday and a colonoscopy scheduled for October. I am anemic but hate taking iron - it gives me diarrhea. Is anyone else on Pentasa? If Pentasa is "working" should I not have any more symptoms?

I am taking Pentasa, 2 gm 2 x daily (8 of the 250 mg capsules 2 x a day). At one time Pentasa was a first line drug of choice. It is falling out of favor w/many gastros, especially the IBD researchers, as not being particularly effective.

On the other hand, there are those of us that Pentasa still works quite well for. When my Crohn's first returned after my resection Pentasa alone kept me in symptomatic remission or full remission for quite a few years. Eventually we had to add Imuran and Cipro to support the Imuran until it could take full efffect. It has taken both the Imuran AND the Pentasa together to keep me in symptomatic or full remission for the last 6 years. If I get careless and drop back to 1/2 dosage on the Pentasa w/in 2 weeks I become aware that the Imuran can't do it alone w/o the full dose of Pentasa.

So - it may - or may not - work for you. I hope and pray that it does work for you!

I know that many capsules a day doesn't sound very appealing - but given the alternatives of the "stronger" meds like Remicade, Humria, Cimzia .... you learn to appreciate the lowly Pentasa if you are one of the fortunates it does work for. It certainly is worth a good college try! AND they do make it in a somewhat larger dosage of 500 mg capsules so you only need 8 a day instead of 16 of the 250 mg that I take.

Good luck and God bless!

I've been on and off pentasa for about 10 years or so. It does help. I've taken it with and without prednisone, imuran, etc.
If your symptoms are unbearable or even bad enough, try taking prednisone too and wean off it slowly slowly slowly.
And you're right, some people are never symptom free. But there are also some who get total or near total remission.

CrohnieToo, the liquid form of iron tends to cause more diarrhea in me, whereas the pill caused constipation followed by diarrhea.

I find the best iron pill is Proferrin. It absorbs easily and doesn't cause as much gastrointestinal symptoms. I think some others here have tried it with good results too.

Elevated C-reactive protein indicates inflammation somewhere in the body, but I don't think it's specific enough to say it's your Crohn's. Mines been up some years and down others. There are other inflammatory markers that people talk about here, but I don't know what they are. Anyway, you know you're flaring because you're having diarrhea.

I take Pentasa (6g/day), along with sulfasalazine and prevacid. And folic acid (you should definitely be taking that), vitamin D, flax seed oil. It's working pretty well for my bowels - haven't had signifcant diarrhea since I started the Pentasa (got my flare under control first with pred).

Yes, it is forever - or until it doesn't work anymore. There's a lot of talk on this board about staying one meds once you've gotten to remission, and I think everyone recommends it.

Pentasa is expensive, but it is safe for most of us and works for me (and hopefully you.)

It should be taken long term, like years. Pentasa doesn't absorb very much systematically, so it is a very safe drug to take long term. I even took while pregnant.

yes, I hear you about the popcorn! Have you ever been on prednisone? I don't want to go on it - I am thinking if I am surviving my days on Pentasa then it should be fine to wait...