Pentasa Opinions

[Brian'sMom]

Does anyone else have a child taking Pentasa (5-ASA)? What has been others experience with this? They were going to discontinue it for us if Brian's last SED rate was 0-13. It was 14! So we had to continue it until our next visit in August. I've just noticed that most are on the TNF drug alone. Is Pentasa harmless... or could it be the culprit why we aren't adding on the pounds? My son isn't real hungry...he'll eat at meals and then snacks when I remind him.

 

[Zoodles]

We're still taking it at the same dosage. Our seds and crp are all within normal range.

There's a chance that it isn't doing much medicinally for us at this point. But, I'm afraid to remove it and find out that it was actually contributing to the Humira success.

Brendan didn't gain much weight at first either. He was so severely underweight. Give it time.

 

[MomofIBD's]

As you can see this is the drug Daniel has been on since his DX. I know it was a good 2 months till Daniels blood levels were down almost to normal. It was a combination of the Pentasa, Flagyl, & prednisone that help to get him there. But the only thing that he is on now is the Pentasa. I know he has had trouble in the beginning with some mild nausea & even more diarrhea ( his diarrha was not bad to begin with ). Some of these things are side effects of the medicine. The GI Dr. wanted to switch the Flagyl & Pentasa every couple of months after they got his numbers good & the flair under control. But Daniel had the reaction to the Flagyl. I am not sure where we are going the next time we see the GI. If you haven't read the side effects of the medicines he takes it might be a good idea to. Not to scare you but maybe to help explain why some things may not be what you had hoped! This also helps to talk with your Dr. With knowledge. I hope this helps. I know that Daniel is at the point that if he forgets to take his Pentasa & or probiotic he has loose stools & tummy troubles. One missed dose is all it takes to effect him.

 

[Brian'sMom]

I've read all the side effects that come with all the drugs, but some are so generic; all say diarrhea etc. And they HAVE to say all the scary stuff so no one gets sued! I've just never heard much about people's experience with pentasa...that's why I posted the question. I think its doing nothing for my son. I think the Humira is doing everything. My son hasn't had any of the side effects that are posted on the Pentasa label...headache, sun sensitivity, etc. Its interesting Julz that your son is really benefiting from it, good to know. Maybe I need to give it more credit!

 

[MomofIBD's]

Kathy the only spot they saw when they did his one & only top to bottom scope was about 3 inches at the end of the Ileum just before the Cecum valve. Because this was the only part of his intestines involved made it a mild case. Although the intestine was pretty sick. He also had issues with fissures & a large infected pimple on his bum. I would have to say that the first 6 months of treatments made him sicker than how he was feeling before he was DX with Crohns! He was ready to quit the meds from the beginning & so was my Hubby. But I along with our oldest son (with Crohn's) had to convince them that if left untreated his health could end up a disaster with life changing events. Maybe even a lot worse than what his brother went through. They get it now! Thankfully but it took a really devastating story from a friend aquantence to see the light! I know things won't always be like they are now but the longer we can keep him where he is at the better. I know his GI Doc said that Pentasa works better for milder cases & at the beginning he gave it a 123 punch. Prednisone, Pentasa, & Flagyl. If these fail he is/would be onto 6mp or Imuran. So for now we are just on the Pentasa...

 

[slevan]

My comment is regarding myself as neither of my children have Crohn's. I think Pentasa is a pretty benign drug and I started feeling much better after starting Humira. I got a little cocky thinking the Humira was doing everything and kinda stopped the Pentasa a bit. I ended up having a major flare-up. Who knows what caused it for sure....but I am religious about the Pentasa now. It is pretty safe so I would continue. I don't know about your son, but it is the frequency of having to take it that is so bothersome to me...

 

[Cookie]

I think that mesalamine drugs in general do very little to help active Crohns, but they may help in maintaining remission. It's hard to tell if they actually are doing anything at that point or not, but since there are so few side effects (for most, at least) it's probably better safe than sorry.

 

[Brian'sMom]

Slevan- you are right on about the bothersome -frequency of having to take it. It's also expensive!
Julz, My son's crohn's is not mild. Its also not in his small intestine, its in his traverse colon and decending colon and rectum. We went thru all the intro drugs is a short 7 month period. Prednisone didn't even work the second time. The tnf blocker stuff is only stuff that seems to work for him.
Cookie, He never got into remission until the tnf stuff, but maybe it would be wise to stay with it. I am just a person who doesn't even like to take a tylenol so then I transfer that to my son. (Not vocally to him) but I want him to be on as little as possible!

 

[Cookie]

If your son's disease is in the colon, you should ask his doc about Lialda. It's also mesalamine, but specifically designed for slow release to work on the colon. The nicest thing about it is that it can be taken all at once, so you don't have to remember as often.

 

[MomofIBD's]

Kathy, it does sound like your in another ball park so to speak. Crohns effects are so veriable & far reaching at so many different levels. Daniel is in remission so I think it does keep him there. My oldest son who also has Crohns takes Asacol (sp) which is the same med but a slower delivery meant for the colon too like the Lialda. When he has a flair they put him on Prednisone to get it under control but the Asacol keeps him there. Yes these meds are very expensive state MA has been a big help with our copays that my insurance does not cover. I would read up on these 2 other mesamaline meds & see if they might be less expensive & also more effective for your son. Have a talk with your Dr. about it.
Cookie, thanks for the help! I had forgotten about the other ways this med has as delivery for different effected areas of the intestines.
Slevan, your right about taking it all the time. My son hates it! In the beginning we put the med in applesauce as this was recommended by the GI for easier taking. So my son started saving all the blue capsule shells & putting them all together. It formed this big long ( feet long ) skinny blue pole! Ahhh what kids think up!!! It was several weeks worth! LOL!!! Ps I am so glad your children don't have CD & I hope it stays that way.

Thank you all for helping!!!

 

[Dexky]

Kathy, EJ has been on Asacol since day one. We tried to take him off it when his 6mp had ample time to work but within a couple days, he started to bleed again so we kept him on it and he stopped the bleeding. We did reduce from 2400mg to 1600mg/day though w/o problems.

Maybe I'm kidding myself, but Asa seems so benign compared to everything else, I'm not willing to chance taking him off it again. At least not w/o explicit orders from the doc. So far, he's left that decision up to us and has never balked at the prescrip. for the Asa.

 

[MumofOli]

Hi

Oli is on Asacol at the moment and is suffering terrible diareah, as soon as he eats something, it goes straight through him and had a couple of accidents over the weekend, he has real trouble making it through the day at school.

I don't really want him to go onto anything stronger because he is so young.

Does anyone know how long the body needs in-between doses, I think if I could give him a dose as soon as he comes home from school and then again before he goes to bed, I think he would be a lot better.

I'll probably be on the phone to GI office AGAIN tomorrow, they are going to be fed up with me, but it's all still new and frightening.

Treena x

 

[Dexky]

Hey Treena, I do think 800mg/day is a very low dose so maybe he could benefit from more. I hope he doesn't need anything stronger but don't let things get out of hand! Is Aza the only other med he's tried??

 

[MumofOli]

Hi Mark

Oli has tried Azathriopine but he had a really bad reaction to it even when they tried to half the dose.

I'm going to call GI nurses today to see what they suggest.

many thanks

Treena

 

[izzi'smom]

Izz is on 500 mg on Pentasa 3 x a day and was in remission for a whole month! (insert sarcasm here) Her doc wanted her to try Asacol but we are working on swallowing pills It doesn't seem to be making a difference one way or the other (we have tried stopping it twice to ensure it isn't CAUSING her symptoms.)

 

[AZMOM]

I'm late weighing in here but wanted to say that Claire never really could digest much Pentasa. She took the capsules and the toilet was FULL of those little pellets. We did not notice an improvement and then there was an increase in liver enzymes so we stopped it and went back to just 6mp. Hindsight being 20/20, I'm pretty sure the Pentasa didn't do squat to her liver.

Hugs from the beach ,

J.

 

[Brian'sMom]

We've noticed those white beads (Pellets) too. Sometimes,not always.

 

[izzi'smom]

I was told that the pellets are just the delivery method...that the drug has already been absorbed and that they are completely normal (actually I may have read it in the ridiculously long paperwork re: Pentasa.)

 

[troydanielbecker]

We have 5-ASA by way of sulfasalazine, and it's compounded in liquid form. I'm with Mark above that it's so much more benign than other stuff out there. As for effectiveness, ours didn't seem to be doing the trick at a low dose but was upped slightly a couple months ago and so far so good, although we won't know for sure for some time at least, because Isaac is also on azathioprine now and just finishing his latest round of prednisolone this month. So when will we ever know if 5-ASA is helping or not?

 

[rubyslippers]

pentasa results

My 22 y/o son has been on pentasa since his initial diagnosis in 2007 after hemicolectomy.
Up until his colonoscopy done in June, his symptoms and labs have been good.
But the colonoscopy results were not. It showed three areas of inflammation, showing that the crohns is out of remission. My son did not have any side effects from the pentasa. He started 6MP last week, along with still taking the pentasa, vit D, iron, multivitamin. His appetite is horrible and he has no energy at all. I am very concerned about the side effects of the 6MP cause this is a chemo drug. I guess, we have no choice. It comes to the point where despite the side effects, the disease runs the show. Not taking these drugs has a worse outcome then taking them. Good Luck.

 

[Dexky]

We have 5-ASA by way of sulfasalazine, and it's compounded in liquid form. I'm with Mark above that it's so much more benign than other stuff out there. As for effectiveness, ours didn't seem to be doing the trick at a low dose but was upped slightly a couple months ago and so far so good, although we won't know for sure for some time at least, because Isaac is also on azathioprine now and just finishing his latest round of prednisolone this month. So when will we ever know if 5-ASA is helping or not?

After EJ had been on 6mp for several months and things were going well, GI said take him off Asacol, cold turkey! After a few days, bloody stools returned. We have reduced Asacol by 1/3 daily since but as long as the doc is willing to renew the rx, we won't try to stop it on our own accord.