mesalazine (Octasa) making things worse?

[username95]

I had improved my symptoms greatly about a week prior to diagnosis via dietary changes, but since ibd diagnosis and starting octasa things have gotten much worse despite maintaining the same diet. Is it likely the fault of the medication or would it be too soon to tell (I have only been taking it for about 2 weeks at this point)?

[jackdup]

sorry i can’t really help you as I have not had this medication but do the reported potential side effects of this drug seem similar to what you are experiencing? Hopefully someone will post that has experience with this drug.

[username95 in reply to jackdup]

The potential side effects are similar but there's also a risk of this medication making ibd worse as a result of intolerance in rarer cases. I'm worried about it being the latter, and even if they are just simply side effects I'm wondering if they eventually subside at all

[bresbo]

I'm sorry you've got problems. You didn't say what your diagnosis is, nor your symptoms. If things were getting much better before you started taking Octasa, what were your reasons for taking it?

[username95 in reply to bresbo]

Sorry for the lack of information. I was suffering from abdominal and anal pains and repeatedly needing to use the bathroom to pass mucus and blood (as well as passing stool being difficult and accompanied by more mucus and blood), and painful cramps spasms and bloating and needing to pass gas extremely often

all of this eased up greatly a week or so before my sigmoidoscopy after I dropped almost all the fibre from my diet

The consultant called it left distal colitis (unsure if UC or Crohns as biopsy samples to confirm diagnosis haven't returned yet) and pointed out inflammation and bleeding and many ulcers and told me to start on 800mg octasa 3 times a day straight away

After a week of starting on these meds the aforementioned issues have returned to becoming much worse despite me keeping the same diet that had previously improved the symptoms. I'm wondering if the medication is at fault as these are potential side effects that would eventually subside or if it's potentially a sign of intolerance and would be making the condition worse

[jackdup in reply to username95]

Is it possible to get ahold of your doctor and see what he/she says? Some medications a person adapts to and side effects go away but others can cause issues and should be stopped as perhaps they are doing more harm than good. I think consulting your doctor would be best as none of us here has the medical expertise to advise on something like this, only our personal experiences.

[username95 in reply to jackdup]

I agree with you re. consulting the doctor but the examination was carried out by a consultant whom I'm not sure how to get hold of (or if I'm even supposed to get hold of. Admittedly I haven't tried contacting my regular GP about it yet) . They gave a number to contact an ibd nurse but they haven't been answering

[jackdup in reply to username95]

That is always a predicament, hopefully you can get ahold of the IBD nurse and if not than your GP. Good chance the nurse might know best.

Good luck and let us know how you make out.

[bresbo in reply to username95]

Communication is very important at your stage (actually at any stage). Are you UK and NHS? If so:- Phone the hospital; get the number or email address of the consultant's secretary; write to the secretary to be forwarded to the consultant. Secondly, you say you've got a phone number for your local IBD helpline. Find out if there's an email address associated with that, then email the IBD helpline explaining your problem. Don't do it through your GP; until they discharge you back to your GP, the hospital/consultant are responsible for your care.

[bresbo in reply to username95]

Let's assume it's UC. And you just had a sigmoidoscopy - not a colonoscopy? Did they say if the ulceration continued past the limit of their vision? Did they say that the ulceration was low down in the sigmoid and rectum? If the ulceration is low down, then oral mesalazine is generally not as effective as rectal. Whatever the case, in a flare you want to have a low fibre bland diet. But if you've got ulceration, you will need medication to calm things down. Some people report that they are intolerant of one brand of oral mesalazine but okay with another. So that's something you could report back. Maybe try Salofalk granules?

If your symptoms have worsened and you suspect the mesalazine is not working, you could ask for steroids straight away - Cortiment orally combined with Budenofalk rectal foam (or even prednisolone rectal foam) for 4 to 8 weeks. I must say that mesalazine on its own has never got me out of a flare. Steroids have.

All the best!

[username95 in reply to bresbo]

Thank you for the advice. They said after the first 30cm of looking up there everything was fine beyond that so it's just that last foot or so that seems to have issue that they saw

[bresbo in reply to username95]

That means you've got proctitis plus a bit (maybe 15 cm). I don't believe oral mesalazine is of much help for proctitis. They continue to prescribe it, because the drug manufacturers tell them to, and because quite a few patients don't like using rectal medication.

How long have you been losing blood? Have you had a blood test to check for a) something else, and b) anaemia? I think I'd ask for the steroids.

[username95 in reply to bresbo]

Blood discharge and blood in stool been going on for a few months but had blood tests haven't indicated anything like anemia. I am indeed with NHS and will try the idea of getting in touch with the secretary should i still be unable to get hold of the ibd nurse. The email address they initially gave didn't work and just bounced the email back. Thank you so much for the advice by the way

[Inxs11]

I had octass tablets and they weren't doing anything,I have left sided colitis and after seeing doctor he put me on steroids to calm flare up down and then started me on octasa granules and after a while every thing was fine,that was 8 years ago,I still have the odd flare-up.then I altakw octasa suppositories and it clears in a week

[username95 in reply to Inxs11]

steroids seem to be highly effective for everyone so whenever I next get to talk to a doctor about it I'll enquire about that. likewise oral octasa doesn't seem to help many people much from what im reading. Thank you for sharing your experience

[Customerservice]

I had to stop taking this medication as it made my UC worse. Speak to your IBD Nurse asap. I am now on Adalimumab injections and Mercaptopurine tablets and have been in remission for nearly 2 years.