Did Pentasa work for you/your child?

[Amy2]

I've read some negative comments about how poorly Pentasa works for Crohn's. One person said it was like using a Band Aid for cancer, another said their GI said it only worked for 10% of patients...

It is what my 16 year old is taking, so I wanted to find out...

Did it work/is it working for you?

Thanks!

 

[Clash]

Haven't had any experience with Pentasa or any type of mesalamine but wanted to direct you to some threads about others' experience and the studies where they derive the comments you have heard:

http://www.crohnsforum.com/showthread.php?t=50253

And the Cochrane Review they discuss in the above thread:
Cochrane Review

Also if you use the key word pentasa in the search bar you may come up with some more relevant threads

 

[hbrekkaas]

I was diagnosed 2 months ago and put on pentasa and prednisone....I'm in the hospital for the fourth time and headed for surgery in a few hours. So no, it did not work for me.

 

[nogutsnoglory]

I was on Pentasa years ago and I'm not sure if it did anything. It's considered a topical aid and the weakest of all IBD medicines.

 

[Dogluv]

Hi Amy,
I have been on pentasa in the past, it didn't really seem to make a difference, i think it was due to the fact that it isn't a very strong drug. I did start to see a large improvement in my Crohn's when I started taking LDN, I've been on it for quite a while now, I've lost count as to how long, I think 8 or 9 months. I don't know how severe your daughters Crohn's is, mine is considered severe, and it put me into remission, so it could be worth asking your doctor about if you're interested. All the side effects Associated with it are very mild, such as vived dreams, and from what ive experienced its a very safe, effective drug. There's an LDN sub-forum where you can find lots of information on it, and if have any questions feel free to ask.

Good luck, larissa

 

[SarahD]

I was on Pentasa for several years and did quite well on it. My Crohn's was in my colon at the time, but it has since moved to my TI and Pentasa wasn't effective for me then and I had to switch to Imuran.

 

[Amy2]

Son has Crohn's pretty much everywhere you can have it, but it was a slow simmer, that went undiagnosed for a couple of years. Son did 6 weeks of EEN in April, which put him into remission and the dr wants him to continue with Pentasa indefinitely, to keep him in remission. Son is also doing the SCD, which dr seems slightly curious, but mostly indifferent about.

Can Pentasa keep someone in remission? Or, does it work no better than a sugar pill?!

 

[Clash]

The conclusions from the cochrane reviews showed that meslamine didn't fare well as far as being an efficacious treatment for CD. Meslamine drugs work like topicals they are good at getting inflammation under control for the top layer of inflammation, which is why they work for UC, but if you have CD the inflammation affects all layers of the bowel not just the top. So, even if one isn't experiencing symptoms it may be a good idea to get frequent lab work to keep an eye on the inflammation markers and probably a fecal calprotectin stool test every so often. Just to make sure there isn't inflammation simmering away below the surface.

This isn't to say that it doesn't work for some because I've read of members on here that have had good results with it.

 

[Johnnysmom]

My sons GI did mention to us that when someone is diagnosed under 18 it usually means a more severe disease course. I think you might hear from some adults with mild crohn's that found success, but I would be hesitant to use it without any other meds for someone diagnosed at a younger age.

 

[my little penguin]

We tried it for a month for DS since it was a very mild drug.
His disease is end to end as well.
We currently have him on asacol HD and canasa in addition to humira.
The asacol and canasa are similar to pentasa just work further down the tract.
They seem to help with the little extra the humira is not taking care of.

 

[Amy2]

I'm hesitant to change anything, so long as he is doing well...or should I consider doing so? My son is feeling 100% normal now. Yet, it may be due to SCD, Pentasa or something entirely unknown.

Would any of you ask the dr to put your son on stronger meds in this situation? Or would you just monitor things closely for now?

 

[Amy2]

Son had first stomach pain tonight, followed by diarrhea.

 

[SarahD]

I'd follow Clash's suggesting and monitor closely with fecal calprotectin tests. Try not to worry about one-off symptoms as there are lots of things that could cause stomach pain and D - just be vigilant and get your son seen if it continues more than a week or two or if it gets worse.

Personally I'd only opt for stronger meds if there was evidence that the current regime wasn't working, but I know there are others who feel differently. I think that if your son feels well on Pentasa and is monitored very closely with blood tests and the fecal calprotectin test for any signs of inflammation then I'd stick with it so long as his results look good.

 

[LauraGrace]

I've been on Pentasa since I was diagnosed (9 years now). It works wonders for me. It does not fix the whole problem, not by a long shot. But it does help tremendously with the inflammation at the rectum and colon, but it doesn't help the inflammation in my small intestine at all. I've gone without the Pentasa for two days and I notice a difference right away. I kind of agree with the person who said "like putting a bandaid on cancer", cause it doesn't fix the problem completely, but it may help one part of the problem like it does with me. I am on it in addition to stronger meds. Since you said that your son has inflammation everywhere, I would say the Pentasa may help, but only with the addition of other drugs as well.

 

[Amy2]

He's feeling good this morning, but he's down a few lbs from losing all of the water. Just going to live on yogurt, eggs and applesauce today and see if that gets him back on track.

 

[Samboi]

Hi Amy
I had ten years of remission using mesalamine.
I had very mild CD.
Prior to that I had ten years of remission with sulphasalazine(sp?)
Now - severe CD and Humira.
But for a very long time - it worked wonders for me.
If I get cancer - I hope a band aid does the trick just like its equivalent did with the Crohns.
I really miss how easy it was to pop tablets twice a day.
And I could travel easily and for long periods.
Now I can only go for two weeks at a time.
But that's better than not at all!!!!