Pentasa Mesalazine Side Effects

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Diagnosed with ulcerative colitis 3 months ago. Prednisolone and Pentasa initially and former now tapered off. Ongoing Pentasa 4g pd. I seem to have a lot of the side effects listed in the notes that come with the drug packs. Worst is the tiredness and dizzyness and intermittent heart flutter in region of upper colon. My joints ache too. I'm assuming (hoping) it's the drug and not some other associated condition. UC consultant doesn't seem that interested beyond ensuring that the colon inflammation and bleeding is controlled so have made a GP appointment to discuss and will not doubt be sent for blood tests. If it is the Pentasa causing these side effects, is it something that wears off the longer one takes the drug ot just something I have to live with?

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  • Posted

    yeah I thought the joint pain I had were due to the meds, although I was told by the ibd clinic that it was the colitis - but who knows - doubt if they know! I used to get palpitations also but steroids speed everything up so no doubt they are the cause- I hate taking predisolone I am glad I dont have to take meds anymore apart from sepostitries, I have a stoma now so I just have proctitis. Look into herbal remedies if you can. I have found B12 & folic acid make a difference to my blood loss, although am intollerable to iron I think the folic acid is a good replacement. I think the whole colitis thing makes you feel crap sometimes...I hope you reach remission soon. carly
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    • Posted

      Thank you Carly. I'm no longer taking the prednisolone. I was able to start tapering off that quite quickly and took last 5mg dose before Christmas. Now just the Pentasa. Although the bleeding stopped within a month of taking the steriods, the consultant made it clear I am not to be complacent and that my colon is likely to be inflamed still and I have to keep taking the Pentasa. I wondered if I was feeling extra-poorly as I had a bad cold and cough before Christmas which I found difficult to shake so maybe some post viral malaise going on too. My body just feels so weird, as if my nerves are jangling as well as all the aches and pains, tiredness and dizziness. I'm taking a multivitamin supplement although consultant warned me off taking too much iron which he said would irritate the colon. I'm learning that UC is a very complex condition, that inflammation won't be confined to the colon and can have implications for many other parts of the body so maybe it isn't the Pentasa that's to blame for the strange way I feel.
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  • Posted

    sorry to hear that you have been diagnosed with this horrible condition, your symptoms sound exactly the same as mine were, I was diagnosed about 2.5 years ago and I had a newborn baby to look after aswell as a 5 year old, I found it very hard - in and out of hospital also. I get very achey and tired too and I just have to take time out and flop in bed. I feel guilty because I cannot do the things the other mums do with their children and thats hard to accept. take care and carry on doing what you are doing, its all you can do!
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    • Posted

      Gosh, that must be tough. Yes, it's a horrible and much misunderstood condition. Of the people I have told about it, most seem to think it's the same as IBS. I've lost count of how many people have said, oh yes, I've got that. Do the other mums understand how debilitating this can be ?

      I think I just need some reassurance from the medics of what this ragbag of additional symptoms are. I've been reading about how fibromyalgia and UC can often go hand in hand; how the adrenal system can take a while to get back to normal after steriod treatment, how general inflammation can affect many parts of the body while a UC flare is happening ... so it could be any number of things.

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  • Posted

    It's my experience after more than 4 years diagnosed with UC that it doesn't really matter what medication you are prescribed, they pretty much all cause the same side effects. I suffer from all you mention and more, I'm really fed up with everything but I plod on anyway! Hospital consultants not very interested as long as bleeding etc contained. I occasionally discuss it with my go who has been very supportive and seems keen for me to try whatever makes me feel a little better but on the whole I pretty much look after my condition myself thru diet, lifestyle and probiotics whilst continuing with the prescribed melds! For example, I have had two hospital appointments cancelled and re-booked by the hospital and the next one given is mid July and if that one stays it will mean I haven't seen a consultants for 1 year and 3 months ! Not too interested in me, however that could be a good sign too that I'm not considered to be seriously ill! My advice to you is to keep on with meds prescribed and establish a good relationship with a GP who will support you in trying different drugs! UC is a hellish condition not understood by anyone who doesn't suffer from it! I wish you good luck, keep using this forum and you will find help here too!
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  • Posted

    Thank you ruari.

    I saw my GP today and she was very helpful. She took my sitting and standing BP and it is dropping some 20 points systolic from 100 to 80 when I stand. She has suggested that it may be due to dehydration related to the UC that my sodium levels may be out of whack. As the consultant pointed out last week - even though the obvious symptoms of the UC stop - as mine did within a couple of weeks of the prednisolone/mesalazine regime - the colon may still be inflamed.  I have to say that although I think I drink plenty of water I do still feel thirsty a lot of the time - not as much as I did during the flare but I am still conscious of it. She has advised me to keep up the Pentasa but maybe drop it down to 2g pd rather than the 4g and we can review in conjuction with the bloods I’ve had done today. She also mentioned, as you have, the possibility of trying another drug if the Pentasa is found to be the reason for the dizzyness but my money’s on the BP (or maybe a combination of both).

    This is all very new to me and a steep learning curve. I’m interested in the probiotics aspect. Can you tell me more about that please?

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  • Posted

    When I was precibed this load of crap I felt like I had constant morning sickness I felt so ill till stopping tablets and waiting 48hrs to get it all out my system they even made the mistake of given me this as an anemia and tablet form while I was In Hospital but by the time I was able to work out what had happened it was too late and made me so Ill making me have to stay In for a further 5 days. It's all trial and error and you sound like your havin a rough time with this stuff like I did, best thing you can do is come off it all and ask your docs for Steriods to help calm it all down till u get a consultant app to discuss dif treatment I'm on infliximab and immune suppressants there are plenty dif types of drugs and my consultant and doc were beyond useless that's why I took myself up crippled up in pain In A&E and getting admitted for 2 weeks. The phone to consultant don't allow them to fobu off like they so easily do and if u get painful bloody or nausea a it vomitting sickness do not bother with doctors go straight up the hospital as doctors just haven't got a clue when it comes to colitis or Crohn's so it's easier to bypass them
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  • Posted

    As I said last time I have tried several different drugs and find the same side effects with them all! I have a good relationship with my GP who is keen for me to try different things. At the moment I am on Mesalazine two 1200mg tabs daily. If I experience a flare up then I resort to Prednisolone for 4 weeks  reducing each week. I also take Ferrous Sulphate  for iron and Adcal for vit C and vit D. The probiotics I take daily - Actimel in a drink and Acidophilus plus in capsule form! I manage pain with Paracetamol and occasionally Tramadol! Life is far from perfect but with a low fibre diet also I now find flare ups much less. I also keep a store of Colafoam just in case! After pure hell over the last 4 plus years, I find this is working for me but it has been a struggle. I certainly don't rely on hospital consultants any more, they don't seem to know how to treat me! All I can advise is to find a good GP who will support you in every way! I wish you good luck.
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