how much budesonide is too much?

[Hephzi]

diagnosed a year ago. Been on 2 courses of budesonide only for symptoms to return. I have been off it 2 months now and there is no end in sight of diarrhoea even with cutting out gluten, lactose, sweetners, alcohol, spicy food etc. I don’t seem to have much left and still rushing to the loo. I can go back to my consultant but if he offers me budesonide I don’t know whether to take it. I would hate this to cause issues such as osteoporosis and only be a temporary solution What else is there? Mesalazine was no good for me.

just so frustrated.

[jakelayla]

Hi there, I'm scratching my head over this as well. I take three courses a year, but only for about a month. Two weeks on 6mg and two weeks 3mg. More frequent short courses work for me.Starting on 6mg works as well as 9mg in my case. I feel taking a lower dose for shorter duration means I can take it more often. Iv'e been told it's safe to take 3mg daily as a maintenance course, but am wary of doing this. Pepto bismol helps me when I'm not on B'nide, but I can't get it anymore from my chemist. B'nide is so effective I find myself wanting to use it almost like an inflammatory drug, forgetting that it's steroidal! I hope you find something to ease your symptoms. Very best wishes and good luck.

[Hephzi in reply to jakelayla]

It is effective isn’t it. But it’s a steroid and I am uncomfortable with it long term. Why isn’t there alternatives? 😫

[Viklou]

I started taking Budesonide February 2021 for 8 weeks, then another 8 week course as symptoms returned and a further 8 week course after that. January this year after speaking to consultant he couldn't give me results of pull cam from the previous September but he agreed as the Budesonide was controlling things that he would get GP to prescribe on repeat. Had another consultation beginning of July where they told me the pill cam had shown issues in my small bowel and to keep taking the Budesonide and he was going to arrange a face to face appointment to which I've just been sent one for the end of September. My dose is currently 6mg with the option to go to 9mg if things get a bit worse. So i would say I've been taking this for what will be 9 months this year by the end of September and 3 courses of it last year. Not sure what's going to happen at the face to face appointment but by all accounts Budesonide is more gut specific and has less side effects than pred, which is more systemic. I do ok on it but still have occasional flare ups it hasn't affected my bones yet either.

[Hephzi in reply to Viklou]

Thanks for your reply. Have they offered bone scans to monitor your bone health?

[Viklou in reply to Hephzi]

I've just had a bone scan for another condition but he did say "I see you've had a bone scan". So maybe he did think about doing one if I hadn't. Anyway my scan was ok

[Lindaspinda55 in reply to Hephzi]

Been taking Budesinide for years with no side effects. My doctors won’t give it to me anymore because of ‘impending’ side effects. They wanted me on a biologic. Then I got sick with covid in my gut. Hospitalized several days. Awful. Very very sick. I since changed my diet and most of my symptoms of crohns subsided. Weird. I eat mostly gluten free, fat free, and lots of watermelon and a grapefruit daily, lots of vegetables and some chicken. Mostly no diarrhea at all with formed stools. Very weird. So I’m not taking anything for crohns. Occasionally I get days where I am back being symptomatic but mostly almost normal. Weird. They gave me lots of different meds when I was in the hospital. Ever since then been better.