has anyone had any long-term success with Pentasa alone?

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New Member

Date Joined Feb 2008
Total Posts : 19
   Posted 7/9/2008 2:06 PM (GMT -7)   
I recently began treatment for Crohn's in the small intestine. I'm taking 8 Pentasa pills a day, and have been feeling much better. I'm curious, has anyone gone into remission with Pentasa alone, and is Pentasa something that typically works long-term? Is Pentasa used both to stop a flare and for maintenance? I know every patient is different, but hearing other stories (hopefully success stories!) with Pentasa would be great :-)

Regular Member

Date Joined Aug 2007
Total Posts : 29
   Posted 7/9/2008 2:52 PM (GMT -7)   
Hi .I have been on pentasa for the last 5 years,prior to that on salazopyrin,(similar drug just more side effects)for 10 years.I have crohns in the large bowel and terminal ileum. I have only used pentasa as maintenance therapy never in a flare, then it is pred for me.I personally don't think pentasa is the right treatment for me as i'm in a flare at the moment and tapering off the pred and as luck would have it i'm restarting my pentasa tomorrow.But then i'm not on the dosage you are on ,usually 4 pills a day,off and on i have been on 6 pills a day,but then i find the side effects especially the headaches unbearable.My dr is not keen to try something else since pentasa keeps me in a "technical" remission.It is sad when the dr relies more on the paper work in front of them than what the patient is telling them.
I know someone with small intestine involvement, and he is on pentasa as well,and doing well,so there is no hard and fast rules for everyone.
If i could tolerate a higher dose of pentasa i'm sure that my symptoms in remission will be less
 Hi I'm crohnie_boy
 33yr old boy . Diagnosed @ age 14 ileocolitis crohn's.
 Taking Pentasa 1500mg twice daily
 Try to keep smiling ,but hard sometimes

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 7/9/2008 3:38 PM (GMT -7)   
I take 4 250's 4 times/ day. I have needed a round of entocort once. Other than that Pentasa and an occasional anti-spasmodic are all I need.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.

Lady G
Regular Member

Date Joined Sep 2006
Total Posts : 321
   Posted 7/9/2008 4:34 PM (GMT -7)   
I took it about 8 years with success then I did have problems after though and am now on Imuran, but for a start it worked good on me for a decent term.
27 year old, married. Diagnosed with Crohns at 17, suspected of having for at least a year or so before that.  Alot of Crohns in my family history.  No surgeries yet. Taking Imuran.

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 7/9/2008 4:57 PM (GMT -7)   
I was on Asacol alone for 2 years with no major flare ups. Then I got one. Hoping it will be enough to hold me through another long remission once I'm completely off the prednisone.
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 5 mg *eek*, Asacol, Questran, Toprol XL (for high blood pressure).

Veteran Member

Date Joined Jan 2003
Total Posts : 734
   Posted 7/10/2008 11:35 AM (GMT -7)   
My mom has been on Pentasa as her only maintance drug for probably 15 years. She stared taking it when it first was approved for CD. Before that her only help was Predinsone.
"We can't beat this disease, YET, but we can't let it beat us!"

"Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34

Regular Member

Date Joined Oct 2006
Total Posts : 153
   Posted 7/10/2008 12:07 PM (GMT -7)   
I've been on Pentasa for the past 6 years and for the most part, it's been enough to keep things under control. It was only last year after I had an abcess, a fistula and constant flare ups that we realized it was time for something new. Just recently started Remicade but will continue to take Pentasa also.

32-year-old female diagnosed with CD in 2001.
Currently taking Pentasa 1g x 4 times daily. Started Remicade July 2008.

Veteran Member

Date Joined May 2003
Total Posts : 9448
   Posted 7/10/2008 6:18 PM (GMT -7)   
Welllllll, it depends on what kind of remission we're talking about. I had excellent results w/JUST Pentasa keeping me in at least "symptomatic remission" for some 7 years or so. But ... is symptomatic remission "enough". I do obviously respond well to it. But since 2003 I've needed Imuran to "help" the Pentasa. On the other hand I quit Pentasa for 6-7 months and was sloppy about taking it maybe 3-4 months prior to that. Oooopsie! Symptoms returned, not bad, but enough to convince me to get "religious" w/my Pentasa again - and its working (along w/the Imuran). They seem to have formed a partnership that I NEED.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

New Member

Date Joined Feb 2008
Total Posts : 19
   Posted 7/11/2008 7:17 PM (GMT -7)   
thanks everyone, I appreciate hearing everyone's experiences!

Regular Member

Date Joined Dec 2006
Total Posts : 66
   Posted 7/12/2008 7:34 AM (GMT -7)   
I have CD of the terminal ileum. I was diagnosed and also had a bowel resection about the same time. I was obstructed and had probably had CD undiagnosed for 20 years.
So I have had 12 inches of TI removed and I also take 8 500 mg Pentasa a day ( 4g/day total). I have been taking this now for 12 years and have been doing fine. I do have occassional flares but watch my diet at that time and after a week or so I'm fine again.

When I have been lazy over the years and not taken all 8 a day I get sick. So I now behave and take them all.

I feel that the Pentasa works well for me and I have never taken any other meds to control the CD.

Post Edited (gobnaitt) : 7/12/2008 8:37:53 AM (GMT-6)

Regular Member

Date Joined Mar 2008
Total Posts : 30
   Posted 7/12/2008 10:05 AM (GMT -7)   
i am on pentasa 8 500mg a day. i started taking them when i knew i was having a flare. my crohn's is in my rectum but i did have it in my ileium until i had a resection. since taking the pentasa  been taking it 2 months or so,i feel great. i have no side effets from the tablets so that is a bonus. i find out on monday wether my crohn's is under control as i'm having a colonoscopy but i feel as though it is. just have to wait and see! :-)
It says in the leaflet to pentasa that it can be used to treat mild flares of UC so i figured that if it can treat mild cases of UC then it can treat mild cases of crohn's. it has made me feel heaps better so i think my crohn's may be under control. i am on no other meds either.

New Member

Date Joined Jul 2012
Total Posts : 1
   Posted 7/31/2012 7:35 PM (GMT -7)   
hello everyone..I am new to this forum. I have had Crohn's since 1972, yes I am old, and I have had just about every complication, surgery and all known treatments known. Currently, I am on Pentasa, 4 GMs a day. and it seems to be keeping me in remission. My last bowel obstruction was in January and it has been decided that I will no longer be able to use prednisone . Since I am off the steroids, my blood sugars are normal and I am now off metformin and actos.
All good.....But, I am not without issues. I have arthritis and I think fibromyalgia. I am not tired all the time but I seem to have much tenderness at all of the trigger points that are the symptoms of this problem. Is it true that Crohn's patients often develope arthritis and.or fibromyalgia?

Veteran Member

Date Joined May 2010
Total Posts : 8384
   Posted 7/31/2012 7:40 PM (GMT -7)   
Hi hoppersmom!

about 20% of people with IBD have joint pain. You should see a rheumatologist to discuss this, IMO. Welcome to the forum! You should start your own post and introduce yourself.
49 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)Colazal (9 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11.

Veteran Member

Date Joined Jan 2010
Total Posts : 1120
   Posted 7/31/2012 9:52 PM (GMT -7)   
I used pred and then entocort plus pentasa to get into remission. I also used diet.
Now I take 3 x 500 per day. The pentasa and the diet thing works for me.

For me this is a very interesting thread. On other threads I read all that time that pentasa does not work. It is nice for me to read all the pentasa success stories. Thanks for asking the question

Veteran Member

Date Joined Nov 2007
Total Posts : 4364
   Posted 8/1/2012 2:42 PM (GMT -7)   
I have had Crohn's for around 6 years. I take 6 500mg pills per day of Pentasa. I have had three major flares during that time period and I was on prednisone, and entocort for about a month each during the flares. The research seems to indicate that Pentasa is no better than placebo for Crohn's, but my GI thinks it can be helpful. I have no side effects from the Pentasa, and my disease doesn't seem serious enough for the biologics, so I have remained on it. I have IBS, which may or may not be related to the Crohn's, but I am ok most of the time.
53 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Also have IBS. Disease spread 12/11 to distal ileum. Dx. with c.difficile and gastroparesis 1/12.
MEDS: Pentasa- 6 500mg pills per day, Omeprazole, Metamucil, colace, miralax as needed, Florastor probiotics
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