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Hi all, looking for some advice/experiences to help if possible...

Struggling to get current flare under control...have been taking 40mg pred foam, 10mg oral pred and 4g pentasa daily for 4 weeks now. Still bleeding and frequent toilet trips etc etc but, although these have lessened somewhat, I'm still in a lot of pain and discomfort. Just had a call from GP - IBD clinic have finally been in touch and suggested adding budesonide (hope that's the right spelling) into the mix. Recommended to use 9mg of budesonide daily, continue with the 10mg oral pred (to reduce to 5mg after a week if all goes well) and stop the pred foam altogether as of today (pretty sure the foam was never really getting to all of the inflammation - hard to tell without a scope). Anyone any info on what I can expect from the budesonide? Good/bad? I've been off my work now for 4 weeks and going a bit stir crazy so hoping for good news so I can go back soon! Thanks in advance, Mel 😊

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  • Posted

    Hi Mel, completely sympathise with your situation. I'm just wondering why they started you on only 10mg oral pred, I've always had to start on 40mg and taper down by 5 weekly. Also the Mesalazine enemas are so much better than the pred foam, they come in a liquid so go further in the colon therfore reaching where they need to.

    I've been given budesonide as clipper didn't work for me either and I can no longer tolerate Prednisolone, im also now on Remicade infusions. The budesonide pretty much works just in the colon so you don't get any of the side effects that you get with the pred. So far I haven't noticed any side effects but you do need 2 full 30 day courses for it to have an effect.

    But if you can get the liquid Mesalazine enemas and budesonide that should hopefully do the trick.

    I hope thats of some help.


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    • Posted

      Thanks Shal75,

      I think to be fair I managed to convince my doc I didn't want to go back on the oral steroids after a bad experience twice before (different flares) so he put me on 40mg of pred foam. It didn't work so he added in the 10mg oral pred to see if it helped. It didn't so now it's the budesonide with the oral pred and just give up with the foam. I'm pleased to hear that I'll maybe get less side effects with this one...Im back at the IBD clinic thursday next week so hopefully we can review everything and see where we go from here...

      Thanks for replying...always glad to know I'm not the only one! 😊

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  • Posted

    Hi Mel. so sorry to hear you are suffering with a flare at present. as a colitis sufferer i know how you feel hun. it's a shame oral pred doesn't agree with you as i always found it so effective in calming a flare down, but i agree with Shal that 10mg is not enough. i always used to start on 35-40mg for about 10days then taper down by 5mg wk to a stop & it always worked.i tried clipper once which was useless - did nothing for me. i have read about budesonide - i think its a newer one - there is info on this on the crohns & colitis website if you want to read more. I've never been on that one myself. I've been off work since mid may now with what was thought to be a colitis flare following a usual flare symtpoms except no blood this time but a high positive calprotectin stool test. my colonoscopy biopsies in july were "within normal limits" & they also removed another polyp from my ascending colon. i also have ibs-d(controlled with diet & daily liquid quality probiotic), bile acid malabsorption (controlled with prescription meds) fructose malabsorption (no fruit or juices in diet). my gastro consultant is now doing small bowel investigations because of continuing symptoms & i am currently awaiting result of a contrast mri scan on my small bowel. i also tested negative for coeliac. when my colitis is in flare  i also found the best enemas were the liquid ones. they are a bit trickier to administer but once you have got it in & laid down on your front for 10mins before bed to let it circulate, you can feel the relief from pain as it cirulates right round the entire colon.  hope this helps, do let us know on here how you get on at your appointment. x

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    • Posted

      I'll let you know how I get on...Thanks guys! ? I'll maybe talk to the consultant about enemas on Thursday...The pred foam really didn't do much I don't think so maybe an enema would be better. I'm so desperate to get off the pred. ..even at 10mg my sleep is just all over the place...Thank god im signed off work just now! I'm hoping the consultant may say I can stop taking the pred altogether and just stay on this budesonide to control this flare. To be fair the last two flairs I've had I started on 40mg oral pred and tapered down and they did control the flare (at least the bleeding) pretty quickly but I got such awful side effects both times (mainly mental health) I just can't face them again! 😢It's just so frustrating that the meds that make you better in one way make you worse in others!

      I'm sorry to hear what's happening with you looloo - Im always aware there are folk worse off than me so I hope you feel better soon! Thanks again for the support guys! Xxx

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