Pentasa Reviews

I have had UC for over 11 years now and have had it quite badly for a long time. I was on this initially when I first got diagnosed and it worked a bit to start but then didn't seem to do anything.
Now however I only use it if I get bleeding and start of a flare and it usually knocks it right back. I am careful to only take a small amount. Sometimes just one dose. 2 grams.The other things which help me are to rest and sleep as much as possible.
I have been taking Ayurvedic Medicine for about 18 months and VSLM probiotic and these have really helped.
The other thing is I eliminate commercial wheat and only eat ancient grains. Pentasa if taken for a long period, caused thinning hair and no effectiveness so for me, works better in small doses only when there's a flare starting.

I was diagnosed with Ulcerative Colitis 6 years ago and have been on 4g of Pentasa a day.
I have not had a flare up during the last 15 months and feel this is mainly down to taking Pentasa

Started on the granules then shifted to the pills. I also have salofalk suppositories if needed. Been on some form of mesalazine since diagnosis in 2016. Had a brief period where I was also put on azathioprine as the lower dose of pentasa wasn't enough to prevent a flare but i had a cancer scare with the azathioprine so that was taken away, and upped the dose of pentasa to 4g daily and it seems to do the trick.
Side effects for me are acne (especially on my back) and hair thinning. But I'll take it.

32yo female proctosigmoiditis.

The pills are quite huge and taking 4 in one go (4 pills twice a day so 8 total) can feel a bit of a chore, they're hard to swallow.

No side effects on 4g/day

Female, 17. I was diagnosed with UC when I was 12 and spent an ENTIRE YEAR going through treatments with Pentasa. My entire large intestine was inflamed and eventually had to be removed. My doctor initially prescribed me 2 300mg tablets in the morning and at night and put me on 40ml of Prednisone. The goal of the treatment was to decrease the amount of prednisone by 10ml every 2 weeks until he could find me a maintenance dose. Every time I got down to 10ml of prednisone i would flare up and he would bring me back up to 40ml of Pred. and increase the dosage of Pentasa by 300mg. by the end of the year I was taking 4 300mg capsules every morning AND night WITH Pentasa enemas. After my doctor realized it wasn't doing anything we abandoned Pentasa and tried everything else available for a now 13 year old girl. long story short, nothing else worked and I got my large intestine removed just before turning 14, but they left 10-15 cm of my large intestine so that they could reverse my ileostomy and I could be a kid again. Fast forward to present day, I'm 17 and I've been hiding the fact that I've been bleeding on and off for the past year in order to focus on school and avoid going through a billion new treatments. please note that I no longer have an ileostomy and have a well functioning J-Pouch (Kind of). I at last revealed that I had prolapse, on and off bleeding, and went to the bathroom up to 12 times a day, depending on what i ingested that day. I am also up 3 times a night to go to the bathroom so I get barely any sleep. my doctor gives me a few treatments and lo and behold they don't work and he ends up transferring me from pediactric care to an adult hospital because he doesn't know what to do with me anymore. So I meet with this new doctor and I tell him the truth and what does he prescribe me, Pentasa suppositories to control my cuffitis. I tried to tell him that I had already went through hell and back when it comes to this medication but he wanted me to give it a shot ughhhh. so I tried it ONCE and by the next morning I was bleeding more than I had in a long time and by the end of the week I realized that I was no longer bleeding 3-4 times a week but every day. its been three weeks since I took it and I am still bleeding 7 days a week .

Age 58. Took it for 2 1/2 years with excellent control, then platelets dropped dramatically and PCP discontinued the use

I am allergic to sulpher based drugs. The hospital knew this yet they still gave me Pentasa. After being on the SCD for 4 years with no UC symptoms I was told by an arrogant specialist that the diet was very very bad and I had to take Pentasa or I would get colorectal cancer. Pentasa sent my bowel into a spin. Within 24 hours I felt like crap and my bowel motions had turned to what resembled dry, green tea leaves floating in the water. I stopped taking it but he had scared me so I kept taking it on and off. It didn't matter. The damage was done. I progressively got worse until I ended up in hospital. This is after never having a flare or taking any drugs for 4 years on the SCD. A colonoscopy showed that 35cm of my bowel was inflamed. The other 5 feet was 'unremarkable'. In other words normal. Three months later a colonoscopy on my second return to hospital revealed that my entire colon was in a raging mess. They called it a flare. I'm calling it war with Pentasa. I could not believe the state my colon was in. My colon was removed and I was given an ileostomy and told it would be reversed when I was in better health. I nearly died. Now I find out that 30 to 40% of people who have the reversal done after removal of their colon find that they are housebound and have no social life so come back asking for the bag again. This is ridiculous. The medical profession have a lot to answer for. They have ruined my life.

I had 3 ulcer attacks in 1 month worst ever finally got back on ascol have not had attack yet. Pentagon did not work for me also had thinning hair

I have had UC for 7 years and am currently on a combination of medications. I use pentasa enemas once or twice a day (I aim for twice but it's not always possible). I think they are great because the liquid goes directly to the inflamed area (similar to putting cream on the inflamed skin for eczema).

For the last 2 years I have been on methotrexate medication. I thought that this was to replace needing the mesalazine and pentasa medication so, as I was keen to reduce taking any unnecessary drugs, when I was feeling well I stopped taking them. Within a week I noticed my UC getting much worse (running to the toilet, stomach cramps). Using the pentasa enema quickly lowered the inflammation again - within a week.

Taking pentasa enema does keep all your BM pretty runny - I expect because it is putting so much liquid in to your bowel area. It also flushes out that area so I don't have much solid poo when using it - but I am not sure that I would anyway because my UC still has a low level of inflammation.

I find that when I eat this shakes up my digestive system and makes me need to pass BM. I take loperamide (Immodium) 1 tablet daily on week days and this stops me needing the toilet during the day as well as making less gas build up. I didn't do this for years as I didn't realise you could until the hospital pharmacist suggested it. I now get loperamide on prescription.

Pentasa enema comes in massive boxes so it is best to get it at a pharmacy with a car park that you can drive to. The pharmacist will carry it to the car for you if you are not feeling well.

I am not aware that I have any side effects from taking mesalazine and pentasa enemas.

I was diagnosed with UC about 6 years ago and, due to a slew of other medications for liver transplant and GIRD, was loathe to take yet a further, rather large, tablet. So I opted for the 1gm granule sachet, which I take twice a day. Unless I am really silly with my diet it keeps the UC at bay and I have had only one or two bad flare ups since being diagnosed. I have never passed blood but did pass mucous before I was put on to the medication. Unfortunately I have rapid metabolic disorder so I find I still use the loo about 4-5 times a day, but the stool is not loose. Apparently I have been cursed with a number of auto-immune disorders and I wonder if any other UC sufferer has a further auto-immune disorder?