Pentasa for Ulcerative Colitis User Reviews

• Mic...
• Taken for 10 years or more
• November 25, 2023

"I was first diagnosed with ulcerative colitis 27 years ago. I was put on Pentasa 500mg twice daily. My GP took me off it after 10 years as he felt it was no longer needed. This was a big mistake. I suffered numerous diarrhea occasions over the 5 years I was off it. This then resulted in needing multiple periods on steroids. My consultant put me back on Pentasa then and I've never had to take steroids since. Pentasa has brought normality back into my life. However, I do find I am very prone to picking up infections. I'm not sure if this is linked to the Pentasa or ulcerative colitis. Overall, it has been a lifesaver in that I no longer miss work and can live a normal lifestyle."

• Deb...
• January 3, 2021

"Received a diagnosis last year of ulcerative colitis when I stopped smoking. Two months later, all the symptoms hit: bloated, pains in the stomach, constipation, and lots of blood! I went for a colonoscopy and was diagnosed with ulcerative colitis. At first, I was given the rectal foam... I found the process awful, once inserted, you couldn’t move, otherwise it triggered a bowel movement and also caused awful cramps. I then tried the Pentasa tablets, taking 2 a day for 8 weeks now, and what a difference! The bloating and pain in the stomach has gone down loads, bowel movements are more regular, and much less bleeding. I still get the odd niggly feelings and a small amount of blood, so the doctor has recommended upping the dose to 4 a day. So far though, these tablets have massively improved my ulcerative colitis. I’m in the UK and fortunate enough to have the NHS, so I pay £9 for three big boxes. It’s crazy to think people have to pay hundreds for no fault of their own!"

• Nou...
• Taken for 2 to 5 years
• March 29, 2021

"I was diagnosed with UC in 2018 due to high levels of stress causing serious diarrhea, sharp stomach pain, bloating, and bleeding. I got various tests until the doctors were able to diagnose me with UC. Starting off with steroids for a couple of weeks, I then began taking 4 tablets daily, and the improvements were amazing. I am able to eat any food without any complications. When I find myself stressed out, I do see little flare-ups, but they go away after a day or two max. I would 100% recommend this medication for anyone to try if you have these symptoms due to stress."

• Ste...
• Taken for 10 years or more
• January 1, 2019

"I began taking Pentasa in 1986 when it was still an experimental drug. I have taken over 150,000 250 mg capsules! My UC has been in remission for over 25 years now. I still take six 250 mg capsules daily. For me, Pentasa has been a miracle drug, as I wasn't too far from death in the early 1980s. I just wish it were available as a generic. I am now on Medicare, and the prescription Part D plans don't pay well. It will cost me hundreds per month."

• pau...
• Taken for 1 to 2 years
• September 17, 2020

"2 years ago, very bad colitis, spent 7 days in hospital, drugs, X-rays, etc. I responded well to drugs, and I am now on 3 Pentasa in the morning and 3 at night, with no side effects, and I do eat anything I want. At the time I went to the hospital, I was 74 years old, and it came on over a period of 2 months. In the end, I lived on the toilet. I did see a specialist, and he sent me straight to the hospital. He said I was gravely ill. I am good now."

• Vit...
• Taken for less than 1 month
• June 23, 2016

"Age 37, diagnosed with bad UC at 12, recent years only flares up 2-3 times/year. Currently fighting the first bout of the year with Pentasa suppositories, taking 1-2/day. Has stopped the bleeding and going less frequently BUT awful headaches (as with Asacol/Salofalk foam enemas). Note to self/others who are sick of drugs: I have found (25 yrs in) that it IS possible to be symptom-free if you properly and consistently take care of yourself. This means plenty of rest/sleep, chamomile tea/water, gentle exercise, meditation (mindfulness is a cliché/buzzword but there's a lot to it), steamed veggies/rice, avoiding sugar/alcohol/dairy/caffeine (going gluten-free can help some people too)... I intend to cure myself completely one of these days!!"

• Ste...
• Taken for 2 to 5 years
• December 30, 2023

"I have had left side colitis since my return from Vietnam in 1970. I have been in and out of the hospital, put on Prednisone so many times, every drug imaginable over the years… Five years ago I had one of my twice yearly bad flares and my Dr. put me on 8 500mg tablets every day. It has been a miracle for me. In remission for 5 years. No side effects. I’m 78 years old, so I have had this a long time. The only negative side is trying to swallow those horse pills… my advice to my fellow sufferers is don’t give up! One last thing… I moved to Costa Rica with my wife 13 years ago. I belong to Caja which is the country's socialized medical system. It covers all the cost of the drug."

• Cho...
• June 3, 2016

"I was given Pentasa 2 mg in sachets after having a bad flare-up of colitis. After a few months of taking it, I started noticing a regular pattern of not being able to sleep, a bad case of restless legs syndrome (unbearable) always at night and partly causing the not sleeping, irregular heartbeats, and having already asthma, it got much worse. So, after going on forums, I realized I wasn't the only one. I halved the dose to 1 g, the symptoms receded, but I still know/feel it's not good to take long-term, and I will start reducing. It also makes me feel constantly tired. On a positive note, it really is effective for what it was designed to do: stop the bad effects of colitis. It's finding a good balance in the dosage along with clean nutrition!"

• Pau...
• Taken for 5 to 10 years
• January 25, 2022

"Stopped smoking 9 years ago, noticed days later I was needing the toilet about 10 times a day, lots of blood in the toilet, lost 3 stone, left it for 3 months, what a fool, well the doctors thought I'd left it too late and would need a bag, well they were wrong, the strong steroids worked. I'm on Pentasa 500 mls in the morning and the same at night, got the powdered form, the tablets would choke a horse, anyway decided to just have the morning tablets, it worked until last year, when my joints were aching and I couldn't walk, not good when you're a landscape gardener. Doctor said it's inflammatory arthritis, and I will get this if I get a bad colitis flare-up, so I started steroids. After 5 weeks I'm back to normal, and started taking the Pentasa morning and night. As of writing this, it looks like I'm going to need another dose of steroids, joints are starting to ache again. P.S. I've put myself down for a trial new drug at a local hospital in Merseyside, if the drug is better I'll get back onto this forum."

• Zon...
• May 17, 2018

"Got diagnosed with ulcerative colitis 25 yrs ago, and they said I had to have a bag, which I refused. Then said, you have to go on steroids, which I also refused. Then I gave up smoking! Wow, 4 months later, UC kicked in with a vengeance, ended up losing a half glass of blood. Can honestly say the toilet was my best friend for 4 months! I plucked up the courage to go to the hospital, had a colonoscopy, and was put on Pentasa, 4 tabs a day - bearing in mind I hadn't taken any tablets except paracetamol occasionally. I put on too much weight, which I didn't like! So it was decided that I cut down to 2 tabs a day. Anyway, still didn't feel right, so I went to the chemist and showed my belly. He gave me water tabs, said take 1 a day, so off I went. Next morning, I couldn't believe it, I had a half solid stool! I thought, that's odd! Now for 2 weeks I'm doing great, 1 Pentasa tab and 1 water tablet, and my weight is leveling off and my stools are normal! My experience maybe not good for everybody!"

• Jac...
• Taken for less than 1 month
• March 16, 2022

"I just was diagnosed with UC recently. My doctor has me on 1 g 4 times a day. Everything was going great for the first couple of weeks. No immediate need. Normal-looking stools and no blood. After the first 2 weeks, however, the bleeding has come back, and I'm using the toilet more than ever. Will be reaching out to my doctor to see if we are overdosing."

• San...
• Taken for 10 years or more
• November 14, 2023

"Pentasa has been a lifesaver. I have been taking it for 23 years with no side effects and have been in remission for 12 years. Pentasa is extremely expensive but works as a maintenance for UC. Now, I am forced to look for an alternative due to costs."

• mor...
• Taken for 10 years or more
• October 8, 2019

"Pentasa works good for me, but I have to follow a diet of no fat, no acidic foods, no spices, no outside food."

• Pet...
• December 6, 2019

"This drug made my colitis worse... more flare-ups and extreme pain... I do not recommend this for ulcerative colitis."

• sus...
• Taken for 1 to 6 months
• October 17, 2015

"Newly diagnosed, but this has really helped me feel normal again. So far, so good. I do struggle with the amount of pills needed, though - right now I'm taking 4 in the morning and 4 at night."

• Ome...
• Taken for less than 1 month
• October 25, 2022

"Taken to curb a flare-up. I’d had UC before about 7 years ago and no problem until now (2022). I was on the loo ten times a day until I went back on Pentasa."