Pentasa for maintaining remission and pushy doctors

[theanonphilosopher]

Hi everyone,

- a bit of history: aged 23, diagnosed Sept 11, illeocecal resection Nov 11, since then remission, colonoscopy results clear Nov 12 -

I was looking for a bit of advise when it comes to medication. I appear to have a very pushy doctor at the moment who talks about Azathioprine everytime I see him. He even said that I will definitely have a reoccurance of Corhn's before correcting himself to say that there is a small chance that may not be the case. Anyway, I've read most of the research that's been done on Azathioprine and I am not keen on taking it because of rare but serious potential side effects. I try to manage my condition with a good diet (vegatarian) and various supplements (vitamin D, B12, Tumeric, multivitamin, garlic, flaxseed oil etc.) and it seems to be going well; I am almost free of symptoms. But everytime I see the doctor he says how likely it is that my symptoms will reoccur. I explained my reasons and general preference for managing without meds but he doesn't seem to buy it. Yesterday, he sort of belatedly mentioned Pentasa and said it was 'near as makes no difference free of side effects that we don't even consider side effects when looking to prescribe it.' From what I've read so far it looks like something I may potentially consider, especially as it may have some ability to supress fee radicals. I was wondering whether anyone else had some experience of this drug? And whether there are any strong opinions on it? Particularly, would it be worth taking it to manage remission?

 

[prettykitty]

Hi, I have been taking Pentasa (and only Pentasa) since 2009. It has worked well for me -- I have fairly mild disease, and I have been in remission for some time.

It is pretty tolerable, but not entirely free of side effects. In particular, it can be damaging to the liver and kidneys. My GI has my blood levels tested every 3 months to monitor my liver and kidney function.

 

[xX_LittleMissValentine_Xx]

Hello,
I was on pentasa for a few years. Then I changed GIs and he said come off it because it doesn't make any difference in crohn's. So I did and I didn't feel any worse.
I've also been on Aza for almost 5 years. Its is scary to hear of all the potential side effects but in all honesty you kinda become immune to it once you are on the drug. I would rather do everything I can to get the disease I know I have under control, than worry about some side effects I might get.

 

[Manzyb]

I took Pentasa for a while, too, and honestly, it didn't do much for me. More than anything it just made me feel nasty because of the sheer amount of pills a day it was. I didn't have any side effects from it, good or bad.

 

[parentnj]

Pentasa did not help our son, it works better for UC than Crohn's. I would consider treatment and medicines carefully, if you are having some symptoms then there is inflammation which is the cause of further damage ... it can happen gradually and then it reaches a point of crisis. I hope you reach a good solution for you and your disease is in remission.

 

[tmclaren]

I was diagnosed in 2005 with SB Crohn's in the terminal ileum. Have been on Pentasa since then, tapered to 3g a day, and have had 2 flares in 8 years. I think it works quite well, no side effects reported.