Pentasa alone?

Hi all. My son was just diagnosed with crohns, mostly in colon and terminal,ileum. Dr has him on a Pentasa, nothing else besides some vitamins and 2 Boost drinks a day. Has anybody had success with Pentasa alone? I see lots of negative reports....not many success stories.

Until this whole ACA debacle I was on Pentasa as my only Crohn's prescription for about 10 years, and pretty much flare free minus a couple minor times a year of mild symptoms but no damage to my insides.  With a constant awareness of my dietary intake, exercise and some dietary supplements and other devices legally available it seemed to work a lot better than it had for some that I've read on here.  I had been feeling so good I had thought about going off my daily maintenance dosage, until my insurance company decided to stop covering it, and since not being on it for almost a year I can tell that it was really working for me.

I have been on pentassa for 7 years,  and have been in complete remission without one symptom from my CD in the colon or ilium.  I also follow the SCD diet too. I don't know if it is the pentassa or the diet or the combination of both that is keeping me in remission, but I have not had a fistula or pain or bad BM in 7 going on 8 years, so I am going keep with pentassa and the SCD.  

Since your son is newlly diagnosed without a lot damage in his colon and intestines, changing his diet now, might make all the difference for his future.  The SCD diet seems to work best at putting people in total remission when it is in a newlly diagnosed person without a lot of previous damage.  It is not an easy diet to follow and takes much dedication , but if it works, it is a lot better then taking a lot of hardcore drugs that have a lot of side effects.

I suggest reading the book "breaking the vicious cycle" which goes into detail about the diet and what foods you can eat and can't eat.   The way I look at it, you have nothing to loose by trying it, and all ti gain if it works for you. 

  

get him on rectal mesalamine retention enemas then. That plus the oral 5-ASA will be the best path forward.

Thanks all. A doctor from CHOP, Childrens Hospital of Philadelphia, which is a leader in IBD for kids, suggested the Pentasa. Our second opinion wanted to go with Remicade and methotrexate. Two diff ends of the spectrum. Ultimately we decided to try Pentasa first because it's not as scary....we can always switch to the stronger meds if needed, I'm just worried we are wasting precious growing time for my 12 1/2 year old, who has only grown about an inch in two years....ugh. Not easy decisions to make, for sure.

Good lord, talking about going from one extreme to the other. But I also agree with gumby and beave; Pentasa is crap for Crohn's. All the mesalamines are. Some further reading for those who are interested.

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

If the disease is very mild, I'd probably start off with Pentasa alone or nothing at all. If it's not mild, then I'd get your boy on stronger meds straight away. Avoid steroids if you can. In children, a liquid or elemental diet for a few weeks can replace having a course of steroids.

Hi Mom2times,
My heart goes out to you. It is hard enough to hear the Crohn's diagnosis, and then you are faced with all of these serious decisions! When I was diagnosed in 2007, I had one bleeding ulcer in my small intestine and a small (a few inches) of inflammation in my terminal ileum. It was definitely considered mild disease. I figured if I needed more serious medications, I would do it when the time came. I thought I was in remission for several years, but the Crohn's was causing slow damage, and by 2014, I needed a resection of about a foot of intestine. By doc's standards my Crohn's is still mild. I still don't know if I would have benefitted from biologics at the outset.
Pentasa helps inflammation in the inner mucosal layer, and Crohn's can eat all the way through all of the layers of intestine and cause stricturing, abscesses and fistulas. Most of the literature I have read states that Pentasa is no better than placebo for controlling Crohn's. I suggest that you go to ccfa.org and read the info and watch some of their webcasts as they can explain all of this far better than me.

I have no science background, so keep that in mind, but your son's lack of growth and Crohn's disease in multiple sites seems more than mild disease. Everything I have read seems to indicate that the docs tend to be more aggressive with medical treatment of kids because they have a much longer time to have to live with the disease (thus more potential for damage) and as you know, Crohn's can interfere with growth. I suspect that you won't know a whole lot more about your son's disease progression in 5 weeks than you do now, unless he immediately starts getting complications, and Crohn's can be insidious and slow in its damage.

Maybe you really need a third medical opinion. For whatever it's worth, if it were my 12 yr old boy, I would go with the biologics....the lack of pain is not really a factor. I'm worried about the damage it is causing, and he is just about to hit adolescence, a time of very high nutritional needs and very rapid growth for boys. My son is 25, but I remember in his teen years it seemed like he'd go to sleep and then wake up bigger....when he hits his growth spurt it will go very fast. This is a critical time for him. So these are all just my opinions as a mom and a Crohnnie....I'm sure the doc at CHOPS and the other doc know a lot more than me. This really is a complicated disease without obvious answers, which is why you are getting conflicting advice. Good luck with your son and decisions. This is a great site with a lot of smart people. Ask us anything, but remember that we are not (for the most part) medical professionals.

The previous two posts are excellent and say it better than I can.

An adult, say aged 40 for example, can go a few years with damaging Crohn's but still have limited impact on their life. A 12 year old, well, if they go a few years with damaging Crohn's, they miss their growth window and end up very small (height and weight) for life, which can have all sorts of repercussions, socially and physically. That is why it's more important to be aggressive with someone of that age.

Worried4myson said...
My son is the same as yours. 11 y.o. and recently diagnosed with mild Crohn's as well. Our GI is from DuPont and we got a second opinion at CHOP (and yes, had all the tests you can imagine). I've also received a lot of advice/insight from this forum some that I've taken some that I haven't. You have to do what's right for you and him.
So, that said, I'll say this based on my experience alone.... My son is on Pentasa 3x/day, Prevacid 1x/day, Omega-3 3x/day (our choice), Iron 2x/day and a multi-vitamin. His last blood tests were the best yet. His SED rate was normal and his CRP was .06 away from normal. The only "big" issue is his iron levels which is why they upped the dose a bit. We have cut out all seeds in his diet (he used to eat a quart of strawberries and pint of raspberries every couple of days) and changed a few other things (food that has hard to digest skins are out--peppers, tomatoes, etc.). This has made all the difference in the world.
There is no way I'm going to put my son on a higher dose of medication unless I have to. And, maybe someday we will--it's very possible he may need a steroid treatment if his next blood test comes back with problems but if things work at a low level why subject someone to more intense meds? I get the point about growth and knocking out the inflammation as soon as possible to induce remission and all that but if this medication is working then I see no issue--especially since he's gained 11 pounds and grown just slightly since we started treatment.
So, this is all a very long-winded way to say do what feels right--whether the step-up approach or starting (and staying) at the top. Please keep us posted. While I know as a mom this sucks--I will say I'm glad this forum exists so I don't feel completely alone--especially after voluminous amounts of hours researching the topic. Good luck to you both.

Thank you. We also go to CHOP, do you mind if I ask what dr you saw there? And did CHOP suggest the Pentasa? Perhaps this is just their standard starting point for all 'mild' cases....

Worried4myson said...
Hi there--sorry for the delay in response. We saw Dr. Flick at CHOP as our second opinion. He felt we should go with something a bit stronger IF three things were a present--unimproved bloodwork, he was feeling worse and increased/showing outward symptoms (rash, ulcers, etc.). He felt that you can't rely on bloodwork alone to make a decision on what treatments to use.

Our primary physician is from Dupont Children's hospital. I think she'd like us to do a round of steroids to knock out the inflammation totally but since his results were almost normal last time we're still at Pentasa "alone". We see her again in a couple weeks. I'm hoping the labs are good again or even better.

I am worried about his growth of course--he's 53" and almost 67lbs. So, he's obviously absorbing the nutrients (as I mentioned he's gained 11
lbs since treatment), I just wish the height growth would kick in...

We see Dr. Flick also...my son will be 13 in feb and is 53.5 inches tall and about 65 lbs...hoping we see some growth soon too....

Thanks for the update worried4myson! We go back to dr. Next week, will let you know what he says...

Well, we had our follow up appt yesterday. Son has gained 2 lbs over past 6 weeks, which is great but loose stools continue. Waiting for blood work to determine if we stay with Pentasa or go to remicade. Our dr does not use the 6mps or methotrexate because he feels they are too risky...so if we need a change, it would just be the remicade....ok, feel free to chime in here!

Thanks beave. Yes, the dr does not use blood work alone. He uses blood work, symptoms and growth...symptoms and growth have been positive, but not perfect as he still has loose stools...so need the third piece before a decision can be made...