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Pentasa - what to expect

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Posted 2/9/2009 7:53 AM (GMT 0)
Hi

My 18 month old hasn't yet being diagnosed but it is likely that she has crohn's. She had a colonoscopy and endoscopy at 13 months and the biopsies said that an infection or crohn's can not be ruled out. She was treated with three weeks of flagyl and we all just hoped it was an infection (she had inflammation and ulcers in her gut and colon). After the flagyl she was ok for a few months but the frequent stools and screaming returned. Then she went on flagyl again but with not such a positive end results (she was never good on the flagyl but made improvements after she finished it), anyway I went to the gastro on Friday and he said that she looked very anemic (which was no surprise) and did some bloods to confirm how anemic is she plus some other bloods which I haven't got any results yet. He also said she has anal fissures which is also a sign of crohn's. So he is putting her on Pentasa (which I had to order from the chemist and will be in tomorrow) for six months, then take her off it see how she goes and probably do another colonoscopy and endoscopy to confirm diagnosis.

Anyway I just wanted to see if others have tried this pentasa and what it is like, any bad reactions or anything. How long it takes to work etc.

Thanks

Belinda

Posted 2/9/2009 12:45 PM (GMT 0)
I'm really sorry to hear this. I sure hope it's not Crohn's disease.

My advice to you is to learn as much as you can about this disease - about the symptoms, about the medication, about the vitamins she's going to need in the future if it's CD.

There are 5 types of medication that are used for CD: Aminosalicylates (Salofalk and Pentasa), Antibiotics (ciprofloxacin and metronidazole), Corticosteroids, immunomodulators (Imuran, 6MP, Methotrexate) and Anti-TNF drugs (Remicade, Humira, and some others). That's about it, sad but true sad

I used to take salofalk. I was on steroids for 7 months. Right now I'm taking Imuran, Pentasa, Metronidazole. Salofalk used to work for me but it doesn't anymore, and I haven't noticed that Pentasa is working for me either. I hope it works for your daughter but I have to tell you that you have to be prepared for her having to take medication all her life. That's why I wrote the whole list above, so that you know about it.

I haven't had much side-effects with Pentasa. The important thing is that you daughter takes folic acid with it because Pentasa "kills" folic acid, all the other meds listed above do too. A lot of patients with CD take B12 shots once or twice a month too, it helps the iron work and we don't seem to have it enough. You have to do blood works often to see if everything's ok with her Pancreas because it can affect it.

I have an exam right now and I have to run, but I'll try to write something more later. This was real quick.

And again, I'm really really sorry :( I hope Pentasa helps her. Hope she won't have to take steroids just yet. If they want to give her steroids maybe you should consider getting a second opinion because steroids affect growth A LOT! So maybe in that case Remicade or Imuran would be a better choice.

Give Pentasa some time, maybe it'll work. Salofalk, which is similar but different, worked for me for 2 years - which was great.

Gotta run!

Stay strong!

P.S. this was really quick
Posted 2/9/2009 2:20 PM (GMT 0)
Pentasa is one of the mildest Crohns meds out there. Before my resections I use to use Pentasa, and had no side effects from it other than seeing the little beads in my stool, but that is normal. Since my resections I take the sister med Asacol and it works well for me.

I am so sorry to hear that one so young could possibly have this darn disease. I pray the Pentasa gets her feeling better soon.

Hugs,
Gail *Nanners*
Posted 2/9/2009 3:01 PM (GMT 0)
Sorry this is even a possibility. Pentasa is a really mild drug. I took it my entire pregnancy and have breastfed my daughter since birth while on it. Through breast milk my daughter gets ~10% of the adult dose and it hasn't caused any side effects for her and it never has for me.

Hope you little one improves very soon.
Posted 2/9/2009 3:48 PM (GMT 0)
The poor thing! Pentasa worked really well for me for a long time and I had no side effects. I hope your little one gets better soon.
Posted 2/9/2009 6:26 PM (GMT 0)
I'm really sorry if the things I wrote above scared you. I was just so sad to hear that a 18 months old baby got CD (possibly got CD) that I just wanted to give you as much information as I could. Honestly, if you need any help we're all here for you and she'll be in our prayers.

Like others said Pentasa is one of the mild CD drugs and the side-effects exist but I think they're pretty rare. Just please make sure she gets folic acid pleeease.

My thoughts and prayers are with you cry
Posted 2/9/2009 7:31 PM (GMT 0)
Caroline_r where do you get that you have to take Folic Acid with Pentasa? I have taken it, and or Asacol for years and never instructed or even read that it is required with these mild meds. On Imuran, 6mp or stronger meds, yes, but never with Asacol or Pentasa type meds.
Posted 2/9/2009 9:01 PM (GMT 0)

Nanners said...
Caroline_r where do you get that you have to take Folic Acid with Pentasa? I have taken it, and or Asacol for years and never instructed or even read that it is required with these mild meds. On Imuran, 6mp or stronger meds, yes, but never with Asacol or Pentasa type meds.

I was told by my doctor to have to take it while I was on Sulfasalazine. Since Mesalazine and Sulfasalazine are very similar (not the same of course) I was told to continue taking Folic acid while on Pentasa too, as a must.

I tried surfing the net and this is what I've found:

Aminosalicylates

Other anti-inflammatory agents widely utilized for decades in treating IBD are the aminosalicylates, particularly sulfasalazine (comprised of sulfapyridine, an antibacterial agent, and 5-aminosalicylic acid, also known as mesalamine) or mesalamine alone. Research has shown sulfasalazine to be effective only in mild-to-moderate disease of the colon, but not for isolated small bowel disease,136

and its use often results in folate deficiency.

137 A recent meta-analysis of slow-release mesalamine (Pentasa®) demonstrated it to be superior to placebo for reducing the CDAI in mild-to- moderate Crohn's Disease.138 The slow-release forms of mesalamine, Asacol® and Pentasa, are released into the small bowel as far as the distal ileum and tend to have fewer side effects than sulfasalazine.

This is from this site: http://www.crohns.net/Miva/education/articles/Conventional_Treatment_of_Crohns_Disease.shtml

And you can find similar information here:

http://gut.bmj.com/cgi/content/extract/53/1/155

http://www.nationmaster.com/encyclopedia/Folic-acid-deficiency
Posted 2/9/2009 9:39 PM (GMT 0)
Nanners, I was never told anything about the folate/folic acid thing either. Even when I was pregnant and on Pentasa they just said to take the regular prenatal. Hmmm.
Posted 2/9/2009 9:58 PM (GMT 0)
From what I've read, sulfasalazine does impact folic acid absorption, and a folic acid supplement is recommended for those on sulfasalazine.

For the other aminosalicylates (such as mesalamine, like pentasa or asacol), folic acid aborption is not impacted (or at least not nearly as much), so supplementation is generally *not* required.  Some doctors recommend it along with these meds anyway, either because: They're unaware the supplementation requirement only applies to sulfasalazine; or they think, folic acid is dirt cheap, it's probably harmless, it might help, so why not?  But generally it's not required for those on pentasa or asacol.

If you're at all concerned you're low, folic acid (folate) levels can be measured with a simple blood test.  This is usually done in conjunction with a B-12 test.

Posted 2/10/2009 7:40 AM (GMT 0)
Hi

Thanks so much for all the replies, I have been flat out so haven't had much time to reply, will be back later tonight to do a proper job.

Belinda
Posted 2/10/2009 3:34 PM (GMT 0)
I think the Folic Acid might be required for the Sulfazine but I don't think with the others. I have taken Pentasa or Asacol for many years and have had Crohns for over 30 years and never advised or told I needed to add Folic Acid with these meds. JMHO
Posted 2/15/2009 12:43 AM (GMT 0)
pentasa is like asprin for the intestines, nothing to it from my experience.
Slow to work, never noticed anything myself from it
Posted 2/16/2009 1:54 PM (GMT 0)
I'm so sorry to hear about your child...I tried pentasa and did not tolerate it...I had severe nausea, vomiting and diarrhea....my doctor said it's well tolerated and couldn't believe those symptoms were caused by the med so I took it again 3 weeks later with the same results....it was like having a 24hr stomach bug...this is not the norm so I hope it works for your child....take care..

Posted 2/16/2009 2:18 PM (GMT 0)
Nanners... I was just changed from asacol to pentasa due to pentasa desolving sooner in the intesteine. My doc and I both thought perhaps that would be better than the asacol due to my pain being in my gallbladder area. My question for you is....have you noticed a difference between the two drugs since they release in different areas?
Posted 2/16/2009 6:20 PM (GMT 0)
I used to take Pentasa and never noticed it helping at all so we stopped it.  I was never informed to take folic acid while on Pentasa, but am now taking it with Sulfasalazine. 

Posted 2/16/2009 10:18 PM (GMT 0)
Hi

SOrry to take so long to reply, things are crazy over this way...

Thanks for the tips regarding the folate I am going to ask the gastro when I ring him today to get the blood results.

She has been on the pentasa for a week now and seems to be making improvements, although it is very difficult to get her to have it half an hour before her morning milk bottle.

Goldy, we haven't seemed to have any bad reactions so far, unlike that horrible flagyl.

caroline, thanks for the info, you didn't scare me at all. I have cried many tears all ready and have done a fair bit of research. I think I pretty much understand what crohn's is but I have real difficulty in knowing how it effects different people. I have no idea what quality of life she will have. She seems to be growing ok which is a good sign, but will it get worse or better? I really don't know and that is what I am finding difficult to comprehend.

Also she seems to be saying 'hurting' alot during nappy changes so I am thinking the fissures are hurting her. For those who have had fissures can you tell me what they feel like and if they hurt when wiping etc.

Thanks again

Belinda

Posted 10/8/2009 10:45 AM (GMT 0)
Hi, I wasn't instructed to supplement folic acid either. I'm 23, was diagnosed Crohn's after a colonoscopy with 3 biopsies about 2 months ago, then confirmed with a blood test to differentiate between UC and CD.
I have taken Pentasa since 2 days after the colonoscopy, but haven't noticed it to help much. I started Prednisone (steroid) at 12 5mg tabs a day and decreased by 1 every 3rd day, and now am down to 2 prednisone... but I'm now having pain and fatigue. I take Tylenol #3 for pain, but didn't today. Abdominal pain woke me up tonight, so I thought I'd do a little more research... hoping I can push myself to finish the last 8 or 9 weeks of classes for the fall semester! (aahh stress).

I'm going to call my GI tomorrow to see about the folate thing along with a couple questions about Remicade or Humira Injections. I know I will be weaning down the Pentasa to begin Biologics, but I don't know WHEN and I'm lacking energy and experiencing gut pains.

Got a flu shot this afternoon and my entire arm was hurting for the rest of the day. It felt like leg pain I've had recently, but it doesn't feel as if it's muscular. Could it be bone pain? Does anyone know what I'm talking about?


I guess I should have started a new thread! I hope you can get your little baby's possible Crohn's under control and into remission. I don't think Pentasa helps at all.
Posted 10/8/2009 10:58 AM (GMT 0)
I meant to give details about the Pentasa... sorry, it's early in the morning. I take 8 Pentasa (500mg capsules) per day (2 pills 4 times a day). I got a few side effects in the first 3 weeks: nausea, headaches, heartburn, tinnitus (ringing ears), confusion, muscle tightness (mostly calves and anterior tibialis and hamstrings for me), and burping. I was in the middle of a flare up that started just before my colonoscopy and Pentasa didn't help to stop the constant diarrhea... I don't even know if Pentasa has done ANYTHING. I noticed the Pentasa was in my stool, but my GI said that is expected. The only side effect that persisted past 3 weeks was the heartburn, for which I take omeprazole once a day.
Posted 10/8/2009 5:20 PM (GMT 0)
this was originally posted in february... but anyways...i agree that pentasa was useless, to me, and i will go even further and say it actually irrigated the fissures to the point of making them worse, into fistulas. The doctor will say no, no ..that the medication working, thats bull****. Tell your doctor you want some other medication ASAP. Just my opinion.
Posted 10/8/2009 11:58 PM (GMT 0)
Since February I've taken enough Pentasa to fill a bathtub...
The only side effects for me is confusion...
Posted 10/9/2009 8:51 PM (GMT 0)
My daughter is 9 and she's been taking Pentasa since last March. It has absolutely no side effects. Do expect tho, to see the tiny little white dots in your baby's poo. This is normal...just the Pentasa coming back out.  Hope it works for her.  As for as...more tummy aches and D so we are on to Entecort. 
Posted 10/10/2009 2:01 AM (GMT 0)
You can have your child's serum folate level checked, after a few weeks or so on Pentasa, via a specific blood test. And then decide whether to supplement.

Has the doc suggested any particular form of iron supplementation?

Since 90% of the GIs my daughter has seen have not suggested any form of supplementation, even the obvious ones like vitamin D and calcium, I don't put too much stock into answers like, "My doc didn't suggest it." -- when it comes to nutritional issues, most docs seems to be clueless.  

Post Edited (njmom) : 10/9/2009 8:15:28 PM (GMT-6)

Posted 10/11/2009 7:07 AM (GMT 0)
its mild...its coats the intestines...i never had any side effects from it..other than some hair loss..i took it while i was pregnant..but did not breastfeed with it..as it was recommended that perhaps i don't since their are not enough studys to show it to be safe longterm....ps..no one every told me to take folic acid
Posted 10/11/2009 7:09 AM (GMT 0)
Your poor little baby..that is just not fair...with a little one to have to deal with Crohn's...sending my prayers your way
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