How long did it take for Pentasa to "work" for you?

Disclaimer: I know all of the research on Pentasa not being better than a placebo for Crohns, but it is the only drug I could get patient assistance with, and $700 a month for everything else was not an option (I have no salary and am paying for grad school on my own).

I'm just wondering, for those of you who benefited from Pentasa, how long did it take for you to see changes? I was diagnosed with mild Crohn's a few months ago, but it is suspected that it's been mild and misdiagnosed as IBS for much of my life (my father was diagnosed with UC at 7, so early onset is typical in my family). I've been on Pentasa for a week or two, and haven't seen any changes yet, but I'm just wondering at what point I should be expecting to either see a change, or conclude that it may not be working for my body.

Thanks!

Your post just doesn't make sense. You know it won't help with Crohn's, but you want to know how long it takes to help with Crohn's? ??

Well, if you go by people with UC who take this class of medication, they usually see gradual improvement over the first few weeks. So give it a month or two if you must.

Are you in the US and do you have insurance? High deductible - is that your problem with paying for medication?

The cheap meds that can be used in Crohn's disease are:

1. Prednisone. Dirt cheap, makes you feel better quickly. But doesn't really fix the underlying inflammation in many cases, and sometimes you end up dependent on it and needing something like a biologic ($$$$) to get off of it. So use it if you're really sick and desperate, but avoid it if you can.

2. Imuran or 6mp. These are old drugs available as generics. They can work for some people, but they do require lots of blood tests at first.

3. Do nothing, and hope for the best. But get regular checks with your GI and don't let the disease get out of control. Once damage is done, it's harder to undo.

Hi CWOJO,
I took Pentasa for several years after I was first diagnosed. UC affects the inner lining of your colon and Pentasa might help with that kind of inflammation. Crohn's can affect all of the layers, which is why some people end out with abcesses and fistulas. So theoretically, Pentasa might help symptoms with mild inflammation from Crohn's.
After taking Pentasa for around 6 years, I ended out with stricturing in my ileum and a bowel obstruction, and needed re-section surgery. So Pentasa didn't prevent the Crohn's from progressing, but it may have helped with symptoms.....I'm not even sure if that is true.

I think Beave is saying that with a high deductible, even with patient assistance, I'm not sure Pentasa is going to do you any good. I also have a high deductible. I have to pay over $1000.00 a month just to get the insurance and then a $2500.00 deductible, so I do understand how overwhelming the financial issues can be. I think you might want a second opinion from another GI. Most of them are no longer prescribing Pentasa for Crohn's. You might be able to get patient assistance for biologics if that is needed. Currently, I'm not on any medications since we believe I'm in remission, but I am getting regular blood tests, fecal calprotectin levels and colonoscopies, which is critical if you go the no medication route. My last blood and stool tests cost me over $500 out of pocket, but I feel I have to pay for this to continue monitoring my disease. These decisions and the costs are really overwhelming.....sorry you are having to go through this.

I have been taking Pentasa for over 10 years and still do. I've tried to go off it a number of times (like 4 in ten years) and every time, shortly after going off it, I develop mucus and blood in my stool. So... perhaps that is psychosomatic? I honestly don't know, but for me personally, I think the medication is keeping me in remission when I get into remission (not there currently, however).

I have been using Pentasa since diagnosed with crohns, although I wouldn't say its put me in remission, but has kept my symptoms in check. I have only had 3 flare ups since my diagnosis. Before the Pentasa I had the mucus, bloody stool and was going to the bathroom 10+ times a day. It took about a month to start working for me.

I was diagnosed March 2016 with Crohn's ileitis and started taking Pentasa. Four 500mg capsules morning & four at night. I would say give it at least a month or so to give it a chance to work for you. I eventually found that it started helping me but to a point where I became constipated. GI Dr. told me to back off on the mg's of Pentasa gradually to see what amount would not constipate, but would control the Crohns symptoms/flare-ups. I am currently taking two 500mg caps in morning and two at night and it seems to be helping me control it.

Gi thinks that my Crohn's was caused from a "medication injury" (meloxicam taken in the past for a probable/temporary carpal tunnel issue).

Hope this helps and best of luck!
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Female 55