The Dr. prescribed me with a Prednisolone suppositories 5mg twice daily plus started oral Mesalazine as Octasa 2.4g/day.
I’m on my 3rd week of the medication. But is not working properly.
I’m taking Octasa in the morning before breakfast (I tried to take it before dinner too) but not doing the job. I’m thinking to take the pills at night before bed. (Dr didn’t give me the best time to take it)
and the suppositories one at bed time and one in the morning after I empty my bawel.
Anyone is on this stage of the treatment and is taking this medicine? Any recommendations? What am I doing wrong?
Thank you.
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MK3L4S
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So sorry about your proctitis woes. My experience of proctitis flares has led me to believe that Octasa doesn't reach down the bowel far enough to have an effect, and suppositories don't reach far enough up. However, what has worked for me are steroid rectal foams - either prednisolone based (these are generic), or budesonide based (Budenofalk). Both are effective (for me), pred tends to have more of a "steroid experience", whilst Budenofalk is gentler and possibly marginally less effective. Use for 4 weeks every night at bedtime. I really hope it helps you.
If you're in the UK, try phoning the consultant's secretary and saying what you want to try. And do you have a local IBD helpline? Emailing them can often get you a prescription if you say that what you're taking isn't working and you'd like to try something else.
Glad you got some cortiment. However I think it works better if used in conjunction with budesonide rectal foam. Ask him what he thinks. My local IBD clinic/helpline always say that proctitis flares are best treated at "both ends" (ie oral and rectal) at the same time.
I hope this reply doesn't turn into an essay, but as you said in one of your earlier messages, the NHS is fairly chaotic. So my own experience has led me to believe that all treatment has to be patient driven. The NICE pathway for treating proctitis that all NHS doctors have to initially follow suggests topical (ie rectal) treatment first, followed by topical plus oral if that doesn't work - see nice.org.uk/guidance/ng130/...
NICE recommendations are not always governed by medical efficacy. Sometimes there's cost, sometimes there's psychology - not everyone is happy shoving a medication up their bum, even though that might work better/quicker than a pill.
From what you've described as your symptoms and your colonoscopy result, you've got a classic proctitis flare - blood, mucous, urgency, maybe diarrhoea, maybe not, all of which ebb and flow both during the day and from day to day. If you've been bleeding a lot, you might even be anaemic a bit (low energy, tiredness) - ask your GP to check that via a blood test.
If oral mesalazine (octasa) doesn't work, and rectal mesalazine (1gm salofalk suppositories I presume?) don't work, and prednisolone suppositories don't work, then as I've said before, it's quite likely that none of these are actually reaching the site of the inflammation. In that case cortiment probably won't reach too well either (though it might), because it's designed the same way as octasa is.
In my case, even mesalazine rectal foam didn't work; but steroid rectal foam did - and very rapidly. Go figure.
I found all this out because my dear gastro consultant - a lovely man - during an 18 month flare never gave me steroid medications, and was ready to put me on biologics (the next level of treatment) because he was under the false impression (how??) that I had tried steroids and they didn't work for me! Those doctors are under a lot of pressure, so it's really important for you to tell them regularly and repeatedly what your symptoms are, how long you've had them, what you've tried, what works, what doesn't work, and finally and most importantly, what you want to try next.
This means you have to read around about your illness, and to be as informed as possible.
So I suggest you get the secretary's email address - if you haven't already. Write a letter to the consultant describing your experience of the above (don't rely on them reading your notes, they haven't got time to, and anyway the notes are sometimes wrong). And finally state clearly what you want to try next. Email that letter to the secretary asking for it to be passed to the consultant asap. Also ask if there is an IBD helpline associated with the hospital trust to which the consultant belongs.
Finally, in answer to your question, yes keep using topical treatments along with oral ones. The pred suppositories probably work better when you're horizontal in bed and the melted wax can drift up your colon. Using a suppository during the day when you're vertical is probably not worth it. And they leak, don't they!? I used to use lady's period panty liners when there was the possibility of leakage, wet farts, and so on.
Thanks for the long essay and well explained. Very helpful information.
How long have you been using steroids foam and how many MG in a dose? Did you have any other medication while using the rectal foam?
As you said. It worked for you very quickly. How are your symptoms after the rectal foam? How long you have been well? Are you feeling any symptoms of going back to normal? Do you need to keep taking more medicine after the rectal foam steroids?
I know is a lot of questions. Lol
I will write down everything in this two weeks until I see the Dr. On the 26th.
But as you told me the medication that I’m taking now is not reaching the affected areas. I think the same.
"How long have you been using steroids foam": You only use a steroid foam (either prednisolone or budesonide) for a fixed period, up to 8 weeks. It was back in February 2021, I'd had a flare for over a year that was beginning to wear me down. Back then I didn't know what I now know. I hadn't been offered steroids - oral or rectal - because the consultant wrongly thought I had already tried them and that they hadn't worked. Once that error came to light, I started with a generic prednisolone foam, and after 4 days switched to a budesonide one (Budenofalk made by Falk Pharma) because budesonide has milder steroid side effects. As it was, within a couple of days of starting the foam, the flare had subsided significantly. Then they added cortiment to the mix (though I'm not sure it actually helped). Within a month or so the flare was completely gone. I arranged with my GP surgery to always have a fresh pack of Budenofalk as a kind of "rescue kit", just in case.
"how many MG in a dose": Generic prednisolone foam comes in an aerosol with a metered dose per application. Usually this is 20mg of pred. Budenofalk comes with a similar delivery system, and 2mg of budesonide per metered dose.
"Did you have any other medication while using the rectal foam": My local IBD helpline said I should/could continue taking oral mesalazine whilst taking the foam and cortiment. I didn't follow this suggestion.
"How are your symptoms after the rectal foam": By the end of the course of foam and cortiment, I had no symptoms.
"How long you have been well": I've had no significant symptoms for the past 3 years. There has been the odd "wobble", but nothing serious. Thank goodness!
"Do you need to keep taking more medicine after the rectal foam steroids": For the past 3 years I've taken a so-called maintenance dose of mesalazine - a 1gm Salofalk suppository probably 2 nights out of 3, and 2x800mg of oral octasa per day - I don't know why, maybe I'm superstitious because I've never felt any positive effect from oral mesalazine.
"Sorry to ask, but where are you based?": Sussex, UK.
"have you tried to stop taking mesalazine?": If I stopped the suppositories for any length of time, I know symptoms would re-occur. Not necessarily a flare, but symptoms all the same. I don't know what would happen if I stopped the oral mesalazine. Possibly nothing? Maybe I should try that.
"Was it a recommendation from the Dr. That you continue with mesalazine. ?": It's all part of the standard and NICE pathway. There is research that shows that a maintenance dose of mesalazine reduces the chance of a subsequent flare. I couldn't say if it's good research, and it doesn't usually distinguish between oral and rectal.
"How about your eating habits": I'm an omnivore with no food allergies, and I eat plenty of home cooked food with very little processed food. I don't believe that diet affects UC generally, but it can in individual cases. During a flare, I eat simple food low in fibre. Otherwise, I eat normally.
Hi. Just a quick question. What were your symtoms of proctitis. They thought I had it with my symtoms but tests show not but they said they will re do them
I've had this for 2 years. When I pass wind of fart it is mucus also. It's a terrible condition and the doctor said wear a diaper. Mine is slightly better going gluten and dairy free. I got a colonoscopy but found nothing. They said it definitely was same symptoms for proctitis.
yeah is a nightmare. I’m trying to control them. I’m also experiencing a lot of internal movement after lunch (probably gas movement) after dinner I’m fine.
But every time I need to fart I have to seat down in the toilet cos mucus comes along with it.
So if they didn’t see anything in your colonoscopy. Have they prescribed you any medicine?
No they tried to discharge me and say it was severe ibs. Did you try a gluten and dairy free diet. Takes a few weeks to get better but that was what all the doctors and specialist said they was sure I had was proctitis but it showed nothing. Maybe something for you to try. No they gave me nothing.I normally get clear mucus but sometimes it's orange
It does sound like your suffering and not on top of it yet. Did the consultants diagnose you with biopsies of your entire colon before seeing the inflammation on the lower half
I had my colonoscopy done on the 13th March 2024. They did full biopsy (no sign of cancer) and only inflammation at the end of the rectum area. I was with mesalazine for couple of months until I got the new medication.
At least they found no cancer. That must have been a massive relief for you as any symptoms can make your mind over think. I did anyway.I'm going through a bad flare at the moment after having a good spell.
Do you get severe flatulance as the mucus is coming out and stomach gurgling or just the passing of mucus.
They say I have ibs but I have my doubts. When I'm in my flare ups with mucus my stools are stringy but then hopefully it recovers each time
I always took my oral meds after food helps it on way .
Suppositories after morning toilet visit and bedtime remember longer the issue longer till difference . At least suppositories have far less side effects and going straight to colon . FODMAP list helps avoid additional irritants and 12 hour gut rest other than water helps also
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