returning to 9 mg of budesonide after a flare

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marygraydonfontana
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Joined: Sun May 26, 2024 4:15 pm

returning to 9 mg of budesonide after a flare

Post by marygraydonfontana »

I was able to taper budesonide down from 9 mg to 4.5 mg and was stable for several months. I then decided to taper to 3.5 mg, but I went into a huge flare after a week. I tried going back to 4.5 which didn't work, then to 6m which didn't work. 7 mg didn't work. So I started back up to 9mg 3 days ago. Has anyone had this kind of experience where even going up to a higher dose than you were on before - still doesn't work to resolve a flare? What did you do? if you went back up to 9 mg, did that work for you? And how long did it take? I'm really afraid that I might not be able to stop the diarrhea even on 9 mg of budesonide. Thank you for any responses you might have to my question. -Mary
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tex
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Re: returning to 9 mg of budesonide after a flare

Post by tex »

Hi Mary,

Welcome to the group. Your experience is typical for many MC patients who use budesonide. Up to 80% of MC patients who respond to budesonide relapse soon after ending the treatment, and in more severe cases, before they even end the treatment. Here's why restarting budesonide at a reduced dosage level doesn't work: corticosteroids work by "shocking the system" with a therapeutic dose (in other words, an effective dose) In order to "resent" the immune system, and then the dose is tapered from there.

But to relapse so soon during the initial treatment suggests that the budesonide is being overpowered by food sensitivities in your diet. Have you changed your diet to eliminate at least gluten? If not, that's why you relapsed. For some of us, soy, or a soy derivative in our diet can cause that.

But to answer your original question about dosing used when restarting a budesonide treatment, your experience is typical — corticosteroid treatments should always be restarted at the full dosage level, and tapered from there. Restarting a treatment at a reduced level occasionally works for some people, but not for most MC patients.

I hope this helps, and again, welcome to the group.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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