08-25-2009, 08:24 AM   #1
PERDITA
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Location: West Sussex, United Kingdom
Pentasa

Hi - would be interested to hear if anyone else is on pentasa - have been on it since I had my op in 2003 - and doesnt seem to make any difference at all - my consultant said to up the dosage but seems to make no difference at all - in fact might just be coincidence but actually feel worse. Only thing is worried about trying something new - has anyone heard of any new miracle cures on the market yet?

I dont know how people manage to keep up beat - this disease is relentless - I find it really hard some days to be positive especially when any stress just makes the symptoms even worse.
09-02-2009, 09:10 PM   #2
panda
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I'm on pentasa too. My crohns has been pretty mild so far, so the pentasa works for me. When I was first diagnosed I was on prednisone, then switched to pentasa for maintenance. I went off of it for a couple of years, but have gone back on it for bouts whenever I've had flareups & it definitely helps. Recommended dose for crohns from what I know is 4 G per day, but my doctor said the last time I saw her that it can go higher. I'm on 2 G per day & was trying to go off again but my dr said I should be on it for life.

And I'm not so sure about that...

Anyways, I haven't noticed side effects. But definitely if you're not finding it effective you should be on something stronger. And you're right, stress is a much bigger factor than anything.
09-03-2009, 05:43 AM   #3
gibby
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Pentasa has been my companion since i was diagnosed 18 years ago, and from someone who couldnt even swallow a prednisolone easily man those tablets were difficult for an 8 year old to handle! But got used to them and over the years my dose has been increased and increased and 6 years ago they had to add in azathioprine as it just wasnt holding my flares at bay.. i am on 4g pentasa daily which is 8 tablets, and was told that is really the maximum, only recently moved up to that, used to be on 3g. Now they are talking about moving me to asacol, which is daunting as they need to get me off my azathioprine soon as its becoming toxic to me, so having two meds changes is a bit scary.. but yeah, never really noticed many side effects with pentasa, it does take a while to kick in tho, but seems a pretty standard IBD drug to use first line.
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Everything happens for a reason, no matter how crap it seems,it shapes you for better things in life. Keep smiling!
Dx UC 1991 when i was 8 years old:

Hospitalised for 2 weeks in July 2011 with burst appendix and peritonitis, surgery, IV antibiotics and a long recovery...

Lovely Meds...
*8x500mg Pentasa (Mesalazine)
*3x50mg Imuran (Azathioprine)
*Mebeverine/Colofac PRN for pain
*and B12 injections every 3 months
*Asacol PR when flaring +/- prednisolone

09-03-2009, 01:59 PM   #4
autumn_rose
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Pentasa was one of the first drugs I was on, and I just recently was taken off. I was also on prednisone at the same time, though, so I can't say for sure, but I do think it help me to an extent. I assume it can take a little while to take effect, but in your case, it should have kicked in. If it's not helping, you'll need to be either on something stronger, or put on something in addition to the pentasa, either permanently or just to get remission, and then maybe the pentasa would work as a maintenance drug. Best of luck to you in finding something that works. I certainly understand feeling down about all this- it is a horrible disease. But I try to think, hey, it could always be worse. I mean, there are little kids that have Cancer and AIDS and they miss out on so much- I mean, I'm still young, and it sucks that I'm sick a lot, but, I've had 23 years of life that have been pretty decent when I think about it, and I'm grateful for that. I hope that you get to feeling better, and can find some positive things to think about and look forward to.
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Loop reversal in April of 2013
Second loop ostomy September of 2013, reversed in September of 2014

In remission, no medications!
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09-04-2009, 03:25 AM   #5
farm
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Pentasa has been my companion since i was diagnosed 18 years ago,
Same here just minus 3 years. It's a maintenance drug so if your having a flare you may need something else to get it back under control. The best miracle drug I've heard of recently is remicade, and I've started that a few weeks back. No real miracle for me, but I am feeling better day by day.
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09-04-2009, 03:59 AM   #6
Mazen
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Location: Beirut, Lebanon
I've been on it , 3g, since being diagnosed in 2000. Along the way, when I flare i usually take in addition Prednisone or antibiotics...
09-07-2009, 02:37 PM   #7
PERDITA
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Location: West Sussex, United Kingdom
Thanks for that chaps, will have to ask doctor to give me something else - when I get my appointment that is have been waiting ages!!
09-08-2009, 07:37 AM   #8
PERDITA
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Location: West Sussex, United Kingdom
Hi Shantel, thanks for info - I see you are on remicade, does it work and what are the side effects?
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