Pentasa for Crohn's Disease, Maintenance User Reviews (Page 2)

• Anonymous
• November 2, 2011

"I am a 25-year-old female who was diagnosed with Crohn's almost 2 months ago. Pentasa has helped to relieve the very severe stomach cramping I was experiencing before my diagnosis. This is the first treatment my doctor has given me, but after a month of taking 4-250 mg capsules 4 times a day (in combination with Budesonide 9 mg), I finally feel comfortable after eating. I'm not noticing any side effects yet. Maybe I'm lucky, though, after reading some of these other reviews. I wish I didn't have to take 16 of them each day, but to be able to stand up after a meal is wonderful for someone who used to keel over screaming and crying with a rock-hard stomach after eating."

• Rit...
• April 26, 2017

"I have been taking Pentasa for 10 years and it has relieved all cramps and distensions. I'm able to lead my life comfortably now. Only recently, I have developed rashes all over and want to know if anyone else is facing the same way."

• red...
• December 26, 2009

"My husband has only been taking Pentasa for a few days, but he has had terrible side effects since day one. His Crohn's had become progressively worse over the years, so his GI doctor prescribed Pentasa. He has chest pains, headaches, severe nausea and vomiting, as well as loss of appetite. I saw that one person had to lower his dose after 3 weeks, and I wonder if that was due to his experience of these effects also. I know Pentasa has great potential, but how long will these effects last?"

• bel...
• March 31, 2015

"My main symptoms were diarrhea and bloody mucus stools. Once on Pentasa 4g a day, the symptoms had stopped. Until a month ago, where they began, along with a lot of wind. Was using suppositories as well, initially 1, then 2 per day. I've stopped taking all medication till I see my specialist. So far, symptoms are on worse-better, if anything. No longer running to the toilet all day. I've had colitis for less than a year. I'm 35."

• Sco...
• Taken for 10 years or more
• September 21, 2018

"I am 65 years old and have had Crohn's since I was 19. I have tried different meds, but over the last 20 years, I have been very happy with 2, 500 mg of Pentasa daily. It keeps me out of the hospital and maintains my condition to the point I can live with it. However, now that I am on Medicare and have lost my drug coverage, the cost has gone from $400 for a 3-month supply to $1500 for the same 3-month supply. I asked my doctor about trying another drug, it calls for 9, 750 mg pills a day, so here goes, wish me luck."

• Anonymous
• Taken for 10 years or more
• January 22, 2020

"I'm a 51-year-old male from Scotland and was diagnosed with Crohn's at 30. I take 1 sachet of Pentasa in the morning, and it has been keeping everything at bay. I can have a pint or two and can eat what I like with no effects. I can suffer cramps in my back passage through the night, which lasts about 15-30 minutes every 2 to 3 months. Also, losing my hair and on blood pressure tablets. This is side effects of Pentasa."

• Gig...
• February 25, 2010

"I was diagnosed with Crohn's in 2005 after having years of severe diarrhea, stomach pain/cramping, and nausea. After a few weeks of taking the Pentasa (4 grams daily), I felt unbelievably better. Within the last year, I have had lots of breakthrough flares and have had to add other meds (6-MP and Humira shots). I have had an active flare since mid-December with no relief. I have reduced my Pentasa to 2 grams a day because I had noticed that my nausea and other symptoms were more severe on the 4 grams. Even though I feel better, my symptoms have not improved enough, and I have to now add Remicade infusion therapy to my long list of meds. I think that these meds are helpful as long as they are adjusted depending on your symptoms."

• Sar...
• Taken for 10 years or more
• November 6, 2021

"500 mg x 4. Took it for the duration of the disease (30 years). My GI was negligent. The disease was never fully active in her care. Early on, she expressed doubt that I had Crohn’s disease until pathology came back positive. The disease became active after 28 years of mild inflammation. GI dismissed my complaints (only believes colonoscopy, referred back to the last colonoscopy as evidence) until a new colonoscopy revealed a fistula. Referred to a new GI who said I had never been treated for Crohn’s disease because Pentasa doesn’t work for fistulizing Crohn’s. Inflammatory polyps were present and removed at every single colonoscopy with the negligent GI. The new GI used biologic, zero inflammation at colonoscopy. Pentasa - easy to take. Does nothing for your Crohn’s. Inflammatory polyps should not exist if treatment is working. It isn’t preventing inflammation if you have inflammation."

• Anonymous
• July 10, 2017

"Well, I was diagnosed with Crohn's disease at age 29... but the doctors thought I had it before then, I was pregnant, and it laid dormant for about a year. My intestines burst one year ago, and I had to have bowel resection...20 inches and my appendix. After all that, they put me on steroids and Pentasa, two 500 mg, three times a day. At first, I did okay with it, but I'm horrible at taking medicine, so I started decreasing the amount that I took. The doctor is not thrilled, of course, but now that I haven't taken it for a while, I feel no different than when I'm on it. I have diarrhea anytime I eat and occasional gas with pain, but that's it... I'm lucky, I know, and still not sure if I'm making the right choice, but meds are $70/mo."

• Buz...
• Taken for 10 years or more
• November 22, 2016

"I was on Pentasa for 19 years, but every time I had a colonoscopy, the Crohn's was progressing. I finally ended up in the hospital with a severe inflammation. I was told by two GI docs that the Pentasa was probably not working, but back in 1997, except for 6MP, they really had no other alternative. Two months ago, I switched to Humira. Many more side effects than Pentasa, however."

• Min...
• Taken for 10 years or more
• December 2, 2022

"I was diagnosed with Crohn's in 1994. Over the first couple of years, I bounced around on Prednisone, Metronidazole, and a few other things. After a year, a new GI put me on Pentasa. I started at 1 gm each morning and night and have since reduced to 750 mg morning and night. By avoiding trigger foods, reducing stress, and getting plenty of exercise - my Crohn's is reasonably controlled. I haven't even had a significant flare in 5 years. I have experienced just about zero side effects other than some increased sun sensitivity. My old GI spent 15 years trying to convince me that Pentasa does not work and I should try one of the expensive biologicals with a plethora of side effects. My new GI is happy to see that I am doing well with minimal therapy. My insurance is currently bugging me to try the new Pentasa generic. They charge me $40 a month more to have Pentasa. I need to get my GI's opinion."

• Cro...
• Taken for 1 to 2 years
• May 26, 2023

"Pentasa has helped with the inflammation of my early stage Crohn’s. I take 2 tablets three times a day. I still have flares on occasion, and I have had some side effects, but nothing too difficult to manage. Mostly, this drug is very expensive, and my insurance company won’t cover it, so I have to order it from a Canadian drug company. I wish this was more affordable!"

• Med...
• Taken for less than 1 month
• August 31, 2022

"Just diagnosed with Crohn’s disease about two weeks ago. Have suspected it for some time, due to intense pain and cramping after eating, a bowel obstruction, and a fairly sizable weight loss (over about a 4-month period). My GI doc started me on Pentasa, 4 pills twice a day to see how I respond. So far, so good. No ill side effects to speak of. It’s nice to finally be able to eat food without pain and cramping. Taking it combined with prednisone (steroids for about 7 more weeks). Fingers crossed it continues to look up and be positive from here. Thankfully, I have good health insurance and get a 90-day supply for cheap because I don’t know what I’d do if I didn’t."

• cro...
• Taken for 10 years or more
• August 12, 2024

"I have had a good experience with Pentasa. I have been on 4g a day for the last 10 years for Crohn's disease. I don't think I have any major side effects. I have been in remission, blood and scope wise, for years. I do have some symptoms, like cramps and upset stomach every now and then, and have to pace myself sometimes, but overall I'm happy with it. It's not completely perfect symptom wise, but I can live a decent life with it, so all good."

• Gaz...
• May 4, 2016

"This drug Pentasa is the worst drug that I have ever taken. I had severe vomiting, at least over 20 times in the space of 3 to 4 hours, and severe diarrhea, which was even worse. This occurred every 20 minutes or less sometimes, but no bloody [unintelligible] that I was aware of. So people be warned, this drug is crap. It really is."

• mn ...
• Taken for less than 1 month
• December 23, 2012

"I have been on Pentasa, 2 capsules 2x a day. First week, feel amazing to not have all-day tummy pain or cramping. Hope I have found something that will continue to work for me."

• Ran...
• November 13, 2015

"I've been on Pentasa for 3 years. I've had very bad acne and lost a lot of hair."

• Anonymous
• October 19, 2009

"My child was diagnosed 05/06. Since that time, the only major flare he has had was precipitated by the stomach flu. He is otherwise basically controlled with Pentasa."

• Emm...
• March 26, 2009

"I have never had any significant side effects from Pentasa, and it has kept me feeling great."

• Pau...
• May 2, 2017

"It has been great. Works a treat."

• meh...
• March 17, 2011

"I have been on Pentasa since 2002, 500 mg anywhere from 2 a day to 6 a day, and it has helped."

• Anonymous
• October 16, 2009

"Have controlled my flare-ups with Crohn's, however, have experienced more migraines."

• Anonymous
• September 19, 2009

"I have been taking Pentasa for about two months, and my condition has improved. I had to lower the dosage after the first three weeks, but am doing well now."

• Anonymous
• May 24, 2009

"I tried several generic drugs, but they did not work nearly as well as Pentasa."

• pur...
• December 10, 2009

"The pain I have after eating is relieved if I take my medicine on time. Before this, I was unable to eat any foods without having loose stools and severe pain."