Pentasa

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Supermom

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I have read where a lot of your kiddos are taking Pentasa. Yesterday at our Remicade infusion we met with the doctor and I asked about my son possibly trying it, as this is one medicine he has not tried. I wanted to make sure we are able to try everything we can before possibly going back on Methotrexate.

My son has gained ten pounds since August. He is also growing taller, slowly but surely at 63 1/4 inches. I do not have him on any special diet, except he knows what he can and cant eat. He still has symptoms of prolapse, straining, always diarrhea, hurting stomach, sometimes blood in stool.

The doctor was pretty sure in her opinion the Pentasa wont help him.

Do you all find it does/does not help? Any side effects to watch for? He will be taking the max dose, which I think is going to be 3000mg per day.

Any feedback would be appreciated.

Thanks!
 
It didn't help my son at all. It's also very expensive. At times we were paying $400/month.

For 3000mg, you're talking at least 6 big pills a day (500mg). My son couldn't do the 500's because of their size, so he was doing the 250's and taking 8 a day. He was SOOO excited when he got switched to a different med.

Never had any side effects that I can remember. Sometimes we did see the little balls in his BM's and vomit, but that's all.

Hope that helps. Not Pentasa fans here :(
 
Jack is currently on Pentasa for the second time. It is my understanding that it helps surface inflammation like tylenol for the gut. He is on 3000mg a day takes 3 in the morning and 3 in the evening, they are huge. We had GI write a 3 month Rx which we pay $80. We were paying $80 a month when the Rx was written monthly.
Hard to say if it is the Pentasa or the EEN which is helping at this point, he has been taking since September and GI thought it might be just the little extra he needs to get him over the bump. We just started adding food back in so we'll see. No side effects though.
Husband did not like at all when he was on and he passed a lot of little balls on it as well and it did not help him.
 
A has been on Pentasa since April. No side effects, but I don't think it helps much either. She takes the 500mg capsules. They are large but she has no problem swallowing them. Her stool is filled with the little balls.
 
What are the little balls you all are talking about? Do they hurt to pass in the stool? My son has not had any forming of a stool in a long time.

I am hoping maybe it will help at least some. I guess it can only be worth a try. Very expensive but with insurance it will help. I said we would try it two months and if I seen no improvement whatsoever then I would take him off. Next would be EEN and he has fought me on that.
 
They are the Pentasa they are capsules filled with little balls so sometimes the balls are not absorbed/digested but just pass through. Jack has had diarrhea for the past several weeks but we are assuming it's because of the EEN but he has not said anything about little balls being in there only that it is like Mt. Vesuvius going on.
I'm with you on the "worth a try"
 
Yes, not a lot of people have luck with Pentasa alone but as an add on to Remicade maybe it will work. Worth a try anyway. My daughter was on Remicade and needed something to help it along. We were given the Methotrexate option but asked about EEN. The EEN did it's thing and she was then on Remi alone for 8 more months. We did however have to add Mtx but more for her psoriasis than CD.

Good Luck and keep us posted.
 
Someone correct me if I'm wrong, but I believe if Pentasa works for you it does kick in quickly, right? You don't have to wait months on end so there is that benefit.
 
Yes that is what we were told is that we should see results pretty quickly if it was going to help
 
Didn't work here at all.
Tried asacol as well thought it was doing something
Stopped it and no difference at all
 
My son has been taking (only) Pentasa 3 xs a day since March. He says that he can feel it helping when he takes it with food. No problems, so far.
 
I take 4G /day (8 500mg pills). I do notice a difference although not enough to take away all of my symptoms. I think it depends where the Crohn's is located. Mine is in the ileum and is why my Dr. prescribed this brand of mesalamine.
 
When I was younger I was on Pentasa 4 pills 4 times a day! Too much if you ask me! However, my doctor has told me that they now know Pentasa is not effective. This makes me wonder why people are still being prescribed to it. It has been ten years since I was on it.
 
On a side note: I was on remicade for about five years before I developed a resistance. However, I have been on Humira for years now. It is in the same category as a TNF blocker. It is way cheaper. I pay $10/month opposed to $800.00 after insurance with remicade.
 
My son has only ever been on Pentasa (outside of a very short try on Lialda which he immediately started feeling different so we didn't wait and went right back to Pentasa).

He's doing very well and it is covered by 99.9% by our insurance (we might pay $1.00?).

It is not a drug with high risks. It is one of the lowest leveled drugs, hence if the doctor is willing to give it a try - I would do it.

Good luck! God bless...
 
i,ve been on pentasa for well over a year with no side effects,i feel its helped me but i agree with a lot of people on here you do take a lot of them a day and there a big tablet to swallow.good luck
 
The 5ASA’s are an entry level drug whose effectiveness is questionable overall and certainly once you are rated above mild disease. David has a very good thread about it and unfortunately it doesn’t come off smelling like roses:

http://www.crohnsforum.com/showthread.php?t=36292

That is not to say that it isn’t a useful drug some.

At Matt’s GI visit 6 months ago the GI suggested Pentasa. I questioned the GI about it and voiced my concerns at it being a pretty ineffective drug for Crohn’s. He agreed with me but was able to pull up a couple of studies specifically relating to its use post ileocaecal resection. His point was that in view of Matt’s age, severity of disease at onset and the fact that he has already had surgery then we need to consider that Matt will be living with this for another 60-80 years so we need to do everything we can to keep to the Crohn’s at bay, even if that means we increase his chance by only 1 or 2 percent. I could see his point and could also envisage that with Imuran being the primary catalyst that maybe Pentasa may be helpful in mopping things up a little? Even if it doesn’t it is a pretty inoffensive drug in the scheme of things and Matt said he didn’t mind taking more tablets. He is only on 1grm a day and for us it covered under the government's PBS (Pharmaceutical Benefits Scheme).

Good luck!

Dusty. xxx
 
kat i generally agree with you about pentasa it probably doesn,t do much,maybe its a placebo effect,who knows i,m feeling better thats the important thing even though they are really big tablets to take but hey they leave less room for breakfast so its not all bad.good luck
 
Pentasa alone wasn't enough to get my daughters symptoms under control. She kept flaring every few weeks. Then the GI added Imuran and things settled down.

A few months after starting Imuran she tried to stop the Pentasa and got sick within 2 weeks. Then as soon as she started taking the Pentasa again things settled down so it must be doing something.

It might just be a coincidence but my daughter has had a sore throat on and off since starting the Pentasa... Our nurse doesn't believe its from the Pentasa....I'll have to see what the GI says when we go to see him next month.

Good luck!
 
Sounds like Pentasa is worth a try, you can always have him stop taking it if it doesn't seem to help at all. Our GI said it was like taking an aspirin for a brain tumor, so not effective in treating crohn's when taken alone but could help nudge things in the right direction.

Glad to hear your kiddo is gaining weight. That is where things started getting better with our son. It took many more months before the growth took off and he was in complete remission. I think the healing can take longer than anticipated, maybe the remicade will continue to give him some healing. It took over a year before our son was in solid remission after starting meds.
(((((Hugs))))))
 
upsetmom said:
Pentasa alone wasn't enough to get my daughters symptoms under control. She kept flaring every few weeks. Then the GI added Imuran and things settled down.

A few months after starting Imuran she tried to stop the Pentasa and got sick within 2 weeks. Then as soon as she started taking the Pentasa again things settled down so it must be doing something.

It might just be a coincidence but my daughter has had a sore throat on and off since starting the Pentasa... Our nurse doesn't believe its from the Pentasa....I'll have to see what the GI says when we go to see him next month.

Good luck!
Click to expand...



My son has been taking pentasa since march and he would get sore throats off and on and he thinks it's from the way they gown down his throat. Since the capsules are so big if they turned sideways they would hurt his throat and it would get sore. At his check up a couple days ago the doctor told him he could stop taking them and just focus on taking his 6 MP instead.
 

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