Pentasa - how did others find?

[legallass802]

I’m on 2 tablets twice a day and admittedly have only been taking it for a week but literally the day after I started taking it my UC symptoms got significantly worse, I don’t know if it’s normal and I should stick with it? They’ve continued to be this bad through every time I’ve taken it.

[bantam12]

You could maybe try a lower dose for a few days to see if that's helps, then if ok increase slowly. If side effects are not settling call your IBD nurse or GP.

[Maceygrey]

I have been taking it for a number of years. Not convinced it does a lot but it doesn’t make me worse. I got a bit lazy and stopped taking it partly because I wasn’t convinced it helped and then had a massive flare up so I’m back in it together with lansoprazole. I would contact your GP or IBD specialist. X

[cheryldn]

I have been on Pentasa (mesalazine) for more than 10 years. Like Maceygrey, I’m not sure it’s good or bad but was told by consultant when I started talking it that it wasn’t proven to help or hinder me.

[Dg54vuf in reply to cheryldn]

I was on Pentasa for over ten years. I happened to mention it to my consultant (one of the few times I saw him) and he said he didn’t know why I was taking it. My crohns attacks are high up, just below my stomach and the pentasa is slow release, at one time I was on 9 a day. All those years with the potential for side effects and totally unnecessary, never mind the cost to the NHS. I would advise anyone to look into the medication they are given and make sure it’s doing them some good. Doctors have ‘go to’ medication to prescribe and don’t have time to make sure it’s the right thing for the individual patient.

[Captivil]

Hi there,

Pentasa tablets do take 1-2 weeks to take effect and for you to feel any change.

Also you said that you're taking 2 tablets but you haven't mentioned the dose?

The usual dose to stop a flare up is 4g of pentasa a day and for maintenance 2g of pentasa a day.

I would say wait a few more days and see if you see any improvements. If not just contact the IBD advice line and explain the situation to them. You can call your GP as well but I personally find the IBD advice line more helpful because the nurses will either give you a solutiom straight away or talk to a specialist and then get in touch with you as sokn as possible.

Hope things get better for you!

[legallass802 in reply to Captivil]

Thank you, its 4g I’m on! I think I will try and hold out on it but my flare up has just been awful so wonder how much of it I’m even able to take on.

[Frank121 in reply to legallass802]

Hello Legallass. I take mezevant (another brand name for mesalazine - same as Pentasa) for about 2 years now and I'm stable. When i first started it took about 2 weeks before to settle; during which i had flare up and contacted my IBD nurse who advised me to up the dose for a while. My intial dose was 2.4g and I increased it to 3.6g for about a week. After about 2 weeks, I was fine but I still have occassional flare up which I treat by increasing the dose for a while.

I see you are already taking 4g; so you may want to hang on for a while. You dose is rather high, are you recetly diagnosed? Have you been taking steriods before or this is your first medication?

Hope things improve for you soon.

Tc, Frank

[KEG1]

I took Pentasa for about a year when I was first diagnosed with Crohn's in 2000 and it did not help me at all. I got switched to Imuran (azathioprine) which I was in for 19 years. The Imuran did work up until about a year ago. I am now on Stelara which is much better. There are a few newer better medications like remicade, humira, Entyvio and Stelara and don't see why pentasa or even azathioprine would still be prescribed. I would discuss the newer meds with your gastro.

[Multi-Probs]

Hi I have been on Octasa for a number of years, starred on 6 x 400mg a day, currently on 12 x 400mg a day which is the maximum dose. I have not had a major flare up for sometime, touch wood, also on an 8 week course of Budesonide Foam.