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Struggling to get into remission with Mesalazine

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Ulcerative Colitis
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Posted 1/8/2014 7:33 PM (GMT 0)
I'm pretty new to UC.
I had my colonoscopy in November and started on 4g of Mesalazine a day - slow release. about 3 weeks ago I upped the dose to 5g a day. I was given foam enemas but seemed to react to them badly so I have several unopened boxes that are no good to me which seems a shame.
Since the colonoscopy and treatment starting i have had no blood, and no mucus. So that is obviously good. I am still losing weight but a lot less quickly. Now about 1lb a week as apposed to 3lb. Can only afford to lose another 5 or so though before it becomes a more worrying problem. I only seem to have improved so far. I have some days worse than others. On Christmas day (nothing to do with food eaten) I had 8 bowel movements and was really ill. Today I am quite ill and my bowels feel very agitated but I have only had 2 bowel movements so far. Yesterday I was not too bad.

I feel a bit like I have hit the ceiling with my current treatment and although I have better days, I keep on having bad days as well. I feel like I am part way to remission but don't seem to be able to get any further. I'm not sure what to do next. Should I talk to my doctor about steriods or carry on as I am hoping for greater improvement?

thanks

Post Edited (TheUKSucks) : 1/8/2014 12:37:22 PM (GMT-7)

Posted 1/8/2014 7:39 PM (GMT 0)
I think it's probably reasonable to ask about steroids.

However, I also think it's a good idea to revisit mesalamine enemas. I don't know for sure if the mesalamine foam enemas contain a sulfite preservative, but it's quite possible that they do. In the US, there is a sulfite-free Rowasa, but i have no idea if it's available in the UK. I'd talk to your doctor and pharmacist about it.
Posted 1/8/2014 7:40 PM (GMT 0)
What mesalamine oral exactly are you on?

What's the extent of your UC...meaning throughout or limited?

What enemas, asacol foam or steroid?

Was your initial oral 5ASA 4g, and do you take it all in one dosage?

Let's start with those questions.
q
Posted 1/8/2014 7:47 PM (GMT 0)

quincy said...
What mesalamine oral exactly are you on?

What's the extent of your UC...meaning throughout or limited?

What enemas, asacol foam or steroid?

Was your initial oral 5ASA 4g, and do you take it all in one dosage?

Let's start with those questions.
q

OK, I'm on Pentasa slow release tablets. I started on 4gs - 2g morning, 2g night. I now take an additional 1g mid day as well. I have left sides colitis only.
I had Salofalk foam enema - mesalazine - and took that for a couple of weeks till i ran out. Then there was a supply problme and i was given asacol version which has lots more additives in it, and couldnt handle that so stopped. Not had any steriods of any kind yet.
Posted 1/8/2014 7:48 PM (GMT 0)
Did the Salofalk foam enema help? If so, try to get back on that.
Posted 1/8/2014 8:02 PM (GMT 0)
I'd suggest you drop back to the 4g Pentasa....or ask for doctor to change you to Asacol oral.

Then go back to the Salofalk foam...what was the dosage of the salofalk foam?

Are you on probiotics?

q
Posted 1/8/2014 8:11 PM (GMT 0)
I don't think you're at the point where you need steroids except to maybe try a rectal one. But I'd still try the other mesalamine options such as the liquid enemas.

Are you having diarrhea?

How are you eating at this point?

q
Posted 1/8/2014 8:12 PM (GMT 0)

fruitgirl said...
Did the Salofalk foam enema help? If so, try to get back on that.

I'm not really sure. Sometimes I thought so, other times I didnt. I think it irritated my bowel as well, just to a lesser degree than the asacol one. I might well see if there is any available again though. I tried several pharmacies but they all had none in stock and due to a manufacturing issue couldnt order any in either.
Posted 1/8/2014 8:14 PM (GMT 0)
I'd ask a pharmacist about a sulfite-free mesalmine enema as well. If there's a version of that in the UK, ask your doc for an Rx.
Posted 1/8/2014 8:14 PM (GMT 0)

quincy said...
I'd suggest you drop back to the 4g Pentasa....or ask for doctor to change you to Asacol oral.

Then go back to the Salofalk foam...what was the dosage of the salofalk foam?

Are you on probiotics?

q

It was a 2g foam enema taken at night.
I am on probiotics yes - 6billion at night. I'm on longterm abx treatment for Lyme disease and chronic Bartonella so that complicates things further.
Posted 1/8/2014 8:19 PM (GMT 0)
yes, It does complicate things, and helpful to know what else you're dealing with as well. (make a signature with that info).

What exactly are your symptoms? at this point?

Call the pharmacy and see if they can get in the mesalamine liquid enemas.

q
Posted 1/8/2014 8:41 PM (GMT 0)
I've had the Lyme etc for aroudn 5 years. As it turns out I have probably had UC almost as long, though originally it was diagnosed as IBS and I had lots of mucus but no blood. It only got looked into when I started bleeding in September.
My gastro thinks my UC is contributing to my more systemic symptoms - fatugue, malaise, feeling poisoned, weak, tired, cognitively out of it, etc - but is not the full cause. I think she is right. Certainly my systemic symptoms are worse when my bowels are worse though.
Specifically with my bowels, they feel tender, sore, occationally painful when pressed, agitated and angry, spasming, I get pressure and feel like my intestines want to get rid of what is in there, but often I can't as it's not low enough in my system and ready to come out. When it is ready I get a lot of urgency.

My gasto said it's unusual to have as much tenderness, pain and so she ran a MRE which I am awaiting results on - she wants to also rule out Crohn's which my mother used to have many years ago, though I don't think she thinks I likely have it.
Posted 1/8/2014 8:49 PM (GMT 0)
Oh wow....you're in a more severe situation than most of us are. I can only imagine your torment.

I hope the MRE (MRI?) will give results regarding other digestive involvement.

Why don't you put out a separate thread to Pathogen Killer and ask her perspective and feedback. She's the specialist on that kind of stuff.

Are you seeing an infectious disease specialist for the treatments you're getting?

CFS (meaning chronic fatigue syndrome?) how were you diagnosed for that?

q
Posted 1/8/2014 9:07 PM (GMT 0)
Yeah it's pretty rough here I have to say. I just really want to get my UC into remission as although it is unlikely to solve all my health issues, it would probably give me at least a 10% health improvemnt which in my circumstances right now, would be huge - the difference from being mostly housebound as I am now, to being able to do small trips out with my wife and daughter. And who knows, after that maybe my Lyme and Bartonella treatment would give me some packback.

It was an MRI enterography I think they call it. Worse than the colonoscopy in terms of the effect following the stuff they make you drink, but very good at spotting inflammation so at least I should soon no for sure if there is any other problem! Finger's crossed that there is not!

Thanks for the suggestion, r.e. Pathogen Killer - sounds like the kind of person I need to talk to!
Originally, after about a year of declining health, and struggling to hold my job down, after my GP ruled out the more common stuff with several rounds of blood tests, I was seen at an NHS ME/CFS clinic and they diagnosed me. It's a diagnosis of exclusion. That's as much help as the NHS gives you for that illness unfortunately, so I was on my own.
about a year ago I went to see Prof. Kenny de Meirleir in Belgium (I live in the UK) who is an ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) specialist. He ran a lot of tests and found Lyme and Bartonella. Since then he put me on abx and other treatments to try and kill them. Hard work in itself, but he is probably the best person I can see in Europe for these.

Best
Joel
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