is anyone taking pentasa?

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blueberrydecaf
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Date Joined Jan 2010
Total Posts : 257
   Posted 7/24/2010 8:45 AM (GMT -7)   
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?

appy.lovee
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Date Joined May 2010
Total Posts : 88
   Posted 7/24/2010 9:30 AM (GMT -7)   
I'm on Pentasa and I have been fo the past 3 1/2 years. I take the 500mg pills so I take 8 a day. It helps out alot, but for the most part, or from what I understand from reading everyones expeiriences on here, you will never be completley symptom free. I can definatly see a change in my CD when I stop taking it for a couple of days, typically I end up in the hospital. I don't know if that helped any. Hope it did alittle though.
26 years old.
Diagnosed 11/06, suffered for 9 years undiagnosed.
large family history of Crohns. resection surgury 3/07.
currently on 1000 mgs Pentasa 4xd
also have horrible anxiety & constant sinus infections.
 -- imagination is stronger than knowledge -- myth is more potent than history -- dreams are more powerful than facts -- hope always triumphs over experience -- laughter is the cure for grief -- love is stronger than death --


CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 7/24/2010 9:51 AM (GMT -7)   
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!
My computer says I need to upgrade my brain to be compatible with its new software.


CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 7/24/2010 9:54 AM (GMT -7)   
By the way, iron supplements USUALLY cause constipation in MOST people rather than diarrhea.

I am one of the few oddball crohnies who tends to constipation and I NEED a small dose of daily iron to ensure that I have ONE BM a day that are comfortably formed rather than an uncomfortably hard BM once every 3-4 days.

Maybe a different form or dose of iron would be of benefit to you?
My computer says I need to upgrade my brain to be compatible with its new software.


Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 7/24/2010 11:50 AM (GMT -7)   
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.

blueberrydecaf
Regular Member


Date Joined Jan 2010
Total Posts : 257
   Posted 7/24/2010 9:35 PM (GMT -7)   
Thanks everyone. Question - once you are on Pentasa, are you on it forever (if it is working). It sounds like when any of you have tried to go off of it then more symptoms return...? Should I be counting on 9 pills a day for the long term?
The iron - yes, most ppl it does constipate - but for me it aggravates my intestines and gives me D. about 30min after I take it usually. Just on one gluconate a day right now - I tried a liquid form of iron but I must have been allergic to one of the additives because I broke out in hives two days in a row after taking it, so went back to gluconate. Does anyone's doc do a C-Reactive Protein test? I just had one and it was elevated...?
Thanks for all your thoughts!

kazbern
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Date Joined May 2010
Total Posts : 8375
   Posted 7/24/2010 10:14 PM (GMT -7)   
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.)

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 7/25/2010 6:42 AM (GMT -7)   
Yep I take a bunch (see signature) every day as well, still waiting for the full effect...
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
 
 


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 7/25/2010 10:27 AM (GMT -7)   
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.

ragbag
Regular Member


Date Joined Sep 2003
Total Posts : 109
   Posted 7/25/2010 6:53 PM (GMT -7)   
I have been on Pentasa since I was first diagnosed with Crohn's 12 years ago.  I take three 500 mg. twice a day.  It's always worked well for me.  But as others have said there will most likely always be symptoms of some type.  But luckily for me I've done well and have only had 1 hospitalization with a severe flare with high fevers other than my first hospitalization when I was diagnosed (after consuming a humongous bowl of popcorn) after suffering and being misdiagnosed for a good 20 years with what the dr. called ''inflammation of the intestines''.  I was told to simply take Mylanta after meals.  I never heard the name Crohn's Disease or was offered any helpful medication or information until I was diagnosed in 1998. 

Post Edited (ragbag) : 7/25/2010 7:59:48 PM (GMT-6)


blueberrydecaf
Regular Member


Date Joined Jan 2010
Total Posts : 257
   Posted 7/25/2010 9:00 PM (GMT -7)   
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...
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