Pentasa (Mesalamine) feedback

[JonathanCohen]

My 3 year old son Zachary was recently diagnosed with Crohn's and this week is starting on Pentasa (Mesalamine). Since he's so young and can't swallow pills we are opening the capsules and putting them in gluten free oatmeal or some other similar food item. Evidently they don't make crohn's meds in liquid or chewable form.

Has anyone had experience with this drug? I'd be interested to hear feedback on results.

 

[Astra]

Hiya JonathanCohen
I've taken Pentasa for 8 years now and I don't think I've ever had any side effects, I also don't think it works on it's own without a backup ie an immunosuppressant.
There has been some talk on the forum about mesalazines such as Pentasa not working for Crohns but ok for UC. My consultant actually agrees with this but is keen for me to keep taking it, which I do, more out of habit really, I regard it like an aspirin or similar.

http://www.crohnsforum.com/showthread.php?t=36292&highlight=mesalazine
this is the thread from our David discussing the pros and cons of them.

re: the taking of Pentasa for your son, my tablets dissolve in water or juice etc. Can you get dissolving Pentasa in USA?

 

[DustyKat]

My son started Pentasa about 6 weeks ago and as far as I can tell it hasn't caused any problems, he is on a very low dose though.

Also have a look at this thread for some others experiences:

http://www.crohnsforum.com/showthread.php?t=44963

Dusty. xxx

 

[Farmwife]

Grace's GI wants her to start a brand of this called Apsiro.
We were warned not to chew them. Her kind is made for the TI and right side colon.
It's true that this kind of drug is more for UC and not Crohn's.
Were is your son's disease located at???

BUT some GI's like to start with the least of the drugs. This would be one of them on the least side.

Some one correct me if I'm wrong.

 

[Mehita]

My son was 12 years old when he took Pentasa for a year. He never experienced any side effects, but it really didn't so much for him either and he ended up with a stricture that needed to be removed surgically. Like Astra said, I think it's better for UC versus Crohn's. I don't want to scare you off though because all the different meds work differently for each individual. You just have to go through the motions until you find the right one or the right combo. Pentasa is one of the lightest, and some believe, least effective meds.

If I recall correctly, isn't your son's Crohn's more on the severe side? Did your GI give any reason for starting with Pentasa versus an immunosuppressant? I believe 6MP comes in a liquid form.

Is he feeling any better on the Pentasa?

 

[DustyKat]

Since Pentasa (Mesalamine/5ASA) is designed to be released along the full length of the GI tract it is fine to break the capsule open.

Mesalamine comes in a variety of preparations and those that are sustained release can't be altered from their original presentation.

Mesalamine (5ASA) is at the bottom rung of the treatment ladder so in the scheme of IBD drugs tends to be a quite inoffensive drug.

Dusty. xxx

 

[DanceMom]

A takes Pentasa, among other things, and does not experience side effects from it. However, it was explained to us that the capsules are time released and breaking them open is not an option. I'm not sure which meds, if any, come in liquid form but your son can learn to swallow pills. My non-IBD daughter learned at 2 with the help of applesauce. My IBD child needed to swallow a pill cam and we practiced with candy corn and jelly beans. Kids can do some pretty amazing things.

 

[my little penguin]

DS took pentasa
Per the website you can open the capsules and dump the pills in applesauce
Just not chew them
The capsule shell dissolves in the mouth or stomach in a matter of seconds
Put an empty shell in plain water and you can watch it.

No side effects
It didn't really do anything for my child
We quickly switch to 6-mp

 

[JonathanCohen]

Grace's GI wants her to start a brand of this called Apsiro.
We were warned not to chew them. Her kind is made for the TI and right side colon.
It's true that this kind of drug is more for UC and not Crohn's.
Were is your son's disease located at???

BUT some GI's like to start with the least of the drugs. This would be one of them on the least side.

Some one correct me if I'm wrong.

Zack's Crohn's is at the ileocecal junction. I've been told that's the most common location and that this medicine should be able to reach that point and reduce the inflammation.

 

[Farmwife]

I pray it helps.

Let us know.

 

[Tesscorm]

I may have mentioned this when you posted a while back??? Did your GI mention exclusive enteral nutrition? I don't know if you've already tried EN or steroids to induce remission but, if not, EN has comparable success rates as steroids with none of the side effects. It can also be used with Pentasa.

If the EN can induce remission, hopefully, the Pentasa can maintain it.??

 

[DanceMom]

DS took pentasa
Per the website you can open the capsules and dump the pills in applesauce
Just not chew them
The capsule shell dissolves in the mouth or stomach in a matter of seconds
Put an empty shell in plain water and you can watch it.

No side effects
It didn't really do anything for my child
We quickly switch to 6-mp

I looked on the Pentasa website and could not find information regarding opening the capsules. Where does it state that it is okay to open the capsules and put in applesauce?

 

[JonathanCohen]

Thank you all for your replies. I can't express how helpful it is to know that is a community of people who are going through the same thing as we are and are here when we need support.

Our gastroenterologist is the one who said we could open the capsules and mix them with food. It's not ideal, since the capsule is designed to deliver the medication in a more targeted manner, but he has assured us that the efficacy of the medication should still meet Zack's needs. As soon as we can teach him to swallow the pills we will.

We think Zack's case is mild so we are hopeful that we will be able to avoid some of the more complex therapies that some have been asking me about. We are tightly controlling his diet to eliminate a variety if potential inflammatory triggers which we hope will help facilitate the action of the Pentasa.

Thank you again, so much, for your support.