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Recently diagnosed with Chron's, taking Pentasa

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Crohn's Disease
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Posted 11/10/2007 8:57 AM (GMT 0)
Hi, I've been lurking here for a little while but this is my first post. I'm a new Chron's patient trying to figure things out. Based on a colonoscopy with biopsy and CT scans I was diagnosed a few weeks ago, just after I turned 30. Symptoms started around Memorial Day of this year.

The only thing my doctor prescribed is Pentasa, 1000mg (2 big capsules) four times a day. From reading posts on here it sounds like most people with this disease take multiple medications. Is it unusual that all I'm taking now is Pentasa? I've been on it for 8 days and I'm not sure it's doing anything yet. But my symptoms have been pretty mild to begin with. Does Pentasa do anything to clear up the inflammation or is it just supposed to help keep it away?
Posted 11/10/2007 10:16 AM (GMT 0)
Hi radius, Welcome to Healing Well, I am not on Pentasa. Just wanted to say welcome.
Posted 11/10/2007 6:57 PM (GMT 0)
Pentasa is a mild anti-inflammatory. Usually your doc starts you with Prednisone and something like Pentasa. What symptoms are you having right now? And also welcome to Healingwell!
Posted 11/10/2007 7:27 PM (GMT 0)
I started on Pentasa when I was diagnosed several months back. You really aren't on a high dosage, and you won't notice anything right away, being that it's a maintenance drug. It takes at least 6-8 weeks to kick in. I don't notice any difference being on the 8 capsules a day but, who knows, it could be worse if i weren't taking it. Anyway, i had a CT scan before i started taking them and it showed severe inflammation and just had a follow-up scan last week and the inflammation is down. Whether that be from just the Pentasa is unlikely since I've been on a steroid the entire time. Hang in there, you'll get lovely new drugs to try like the rest of us! There are other recent posts on Pentasa, you should check them out! Good luck and welcome to HW!
Posted 11/10/2007 7:58 PM (GMT 0)
Thanks for the welcoming replies.

My symptoms are off and on loose stools and mild pain, mostly on left side. My doctor seems a little puzzled that I don't feel much on the right side. It mostly affects me in the first few hours after I wake up and sometimes when I eat out. I rarely have any problem when I'm at work (I work evenings until 1 a.m.), I think because I'm busy and my mind is off of Chron's Disease.
Posted 11/10/2007 8:21 PM (GMT 0)
I'm not on pentasa but on something called asacol which is similar (it is also mesalamine), mine is an enteric coated tablet and I guess yours is a sustained release capsule and I noticed that my bm's started getting less diarreah like and more thicker as the days went on.

Hopefully you will only need that =0)

Welcome to healing well.
Posted 11/10/2007 8:52 PM (GMT 0)
I'm only on pentasa also. I started on prednisone, and pentasa. Weaned of pred and 6-mp was added. Ended up with a really bad reaction to 6-mp so I no longer can take it. But since I have mild crohn's and all of the diseased part of my colon was removed, my doctor decided to just have me on pentasa until I develop other symptoms. Been almost a year and so far so good.
Posted 11/10/2007 9:02 PM (GMT 0)
Welcome, was only on asacol at first and then my Doc gradually added all the other stuff when he saw it was not working (also switched me to pentasa cause asacol was not working well) I think some Doc's like to take it slower and see if you can get better with less meds and might add more later on. Karen
Posted 11/10/2007 9:53 PM (GMT 0)
Hi Radius,
I'm newly diagnosed ( a couple of months) and fairly new to this forum too. In a week's time, this site has become my lifeline...thanks to everyone out there!!! After my colonoscopy, I started with a 6 day Medrol dose pack and Pentasa. I was miserably sick...nausea, terrible diarrhea, pain, bloody mucus. I told my doctor that I felt worse than I ever had...he suspected that I was having side effects from the Pentasa and took me off. I then went on to have two more rounds of tapering steriods. We switched from a 6 day dose pack, to 18 days of tapering Presnisone, starting at 30mg. At my request, we are trying the Pentasa again, because I am not convinced that the Pentasa caused the side effects...I think I got all messed up from the colonoscopy, and without the rounds of steriods, I was in a flare. So right now I'm on 15 mg of Prednisone, with plans to taper it down every three days by 5 mg. I just started the Pentasa today, and I have been told it takes about a month to take effect. I am on much less meds than a lot of people on this site, but I also think my doc perceives that my Crohn's is fairly mild. ( They found one 2-3 cm ulcer in my small intestine, and thickened tissue in the ileum which on biopsy was positive for Crohns) I also have bad IBS, but a normal looking colon. If this med plan is unsuccessful, the doc plans to try Entocort next. Good luck and please keep us informed about how you do....it will help me too!
Posted 11/11/2007 5:38 AM (GMT 0)
I felt a little strange for an hour or two after each dose the first several days I took Pentasa. Since then I think I've been side-effect free. But, I've seen diarrhea listed as a side effect for Pentasa, so I don't know now when it occurs whether it's the side effect or Chron's. I go back to the doctor in a week and half and he may add something if Pentasa isn't bringing improvement. After my colonoscopy, my symptoms practically disappeared for a couple weeks. I don't think it was the colonoscopy that did it, but rather the prep stuff (Halflytely, I think it was called) that cleaned me out the day before.
Posted 11/11/2007 7:22 PM (GMT 0)
hi radius & welcome! that is a very low dose of pentasa. i started with 4 a day, i now take 8 a day. took awhile to kick in but i do feel it helps with the d. i am still having a lot of pain since diagnosis so i have been on steroids and pending blood work i will be going on 6mp. chances are you are going to have to increase the pentasa. but wait and see what a few weeks bring :)

best of luck!
Posted 11/11/2007 7:52 PM (GMT 0)
Welcome glade to have you.Yes there are a lot of us that take several meds.I hope you stick around and know you are welcome any time.
Posted 11/11/2007 9:20 PM (GMT 0)

dustspeck said...
hi radius & welcome! that is a very low dose of pentasa. i started with 4 a day, i now take 8 a day.


Thanks. I misstated the amount of Pentasa I'm on. I meant to say I'm taking a total of 8 of the 500mg capsules a day.
Posted 11/11/2007 10:27 PM (GMT 0)
Hello, my doc. put me on the same thing, just Pentasa & I feel fine since my surgeries. So keep with it, I don't think you need to be on multiple meds, as a matter of fact, I know a couple of people with Crohns & neither are on more than 1 type of med. Good luck!
Posted 11/12/2007 1:14 AM (GMT 0)
oh ok! pentasa is used to coat the ulcers you have. if things don't get better in a few weeks, definitely talk to your gi. i still was having d a few times a week (much better than up to 10 times a day) and a lot of pain. i was then put on entocort so that might be your next step.

keep us posted and hope you are feeling better real soon!
Posted 11/12/2007 6:35 AM (GMT 0)
If your case is mild, then it is certainly worthwhile to see whether Pentasa by itself can help. Yes, it can suppress inflammation and might be all you need. So you are taking 4 grams a day? That is the optimal dose for inducing remission and also for maintenance.

Pentasa is considered by GIs to be safer than the other meds, so if it works for you (8 days is too soon to tell), then great! However, if after you have been on it a month, the symptoms don't improve, then you might have to replace it with another med.

Posted 11/12/2007 3:14 PM (GMT 0)
I noticed improvement almost immediately and I also notice when I am late for a dose. I take 1,000mg 3 times a day but now with liver enzymes starting to go up, not sure what is going to happen.
Posted 11/12/2007 8:55 PM (GMT 0)
Hi there and welcome to HW!

I've only ever been on Pentasa too (except for Cipro and Flagyl when I had an abcess last year) and have never had any side-effects as far as I can tell. I've been on 1g four times a day since my diagnosis 6 years ago and it seems to maintain the disease for the most part. But it took a few weeks for me to notice a difference and more than a month for a major difference in my health. Give it a few more weeks and if you still don't feel anything, talk to your doc.

Posted 11/14/2007 5:40 AM (GMT 0)
RK, how bad were your symptoms when you were diagnosed and put on Pentasa? Is it a given that one day we'll need stronger medication or are there some Crohn's patients who are able to manage it with lighter drugs? I'm afraid of some of the side effects of the drugs I've read about almost as much as the disease itself.
Posted 11/14/2007 8:18 AM (GMT 0)
Radius,
Welcome to HW. I'm new, too and everyone here has been very helpful.
In answer to your question about whether or not people "always" have to add meds, it's absolutely up to your symptoms. If you're doing well on just Pentasa, that's considered a pretty benign drug for most and fine to stay on for years. I take three tablets, 4 times a day (3000mg/day) but I know some people take 4000mg/day -- keep meaning to ask my GI about that dosing. I don't have any Pentasa side effects, but I can't tell how much the Pentasa itself helps because I'm taking other things too. I am actually feeling pretty well after about 10 weeks in a bad flare that started with a long hospital stay.

My GI (and the CCFA website) says that about 10-20& of people with CD go into long remission (years at a time) with no symptoms. 10-20% have chronic problems (no real remission, trying different drugs, surgeries) and 60-80% have what they call "relapsing-remitting" disease, meaning that they will have periods with "flares" and the need for more drugs and periods of quiet, with the need for no drugs or few drugs.

The nature of this forum means that we don't seem to have a lot of members in the first, "long remission" category -- people often come to HW because they're having problems or in a flare -- but let's hope you're in that group!

Best of luck to you.
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