Why Do So Many MC Patients Relapse?

By Wayne Persky

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Why do so many MC patients relapse within a few weeks to a few months after their initial budesonide treatment is ended? This hasn't been explored by researchers so there's no medical data to support the possibilities listed here, but it's very likely that relapse is caused mostly by one or more of 3 possibilities:

• Tapering of the budesonide dose is done too rapidly (as the treatment is ended), causing a relapse of the disease due to mast cell rebound, which results in a spontaneous elevated mast cell spike as mast cell populations attempt to rebuild, which causes an inflammation spike.
• Because inflammation is often the most concentrated in the terminal ileum of MC patients, their bile acid malabsorption (BAM) may have been masked by the budesonide, and diarrhea returns after the BAM is no longer suppressed by the budesonide treatment.
• Food sensitivities may show up, causing some patients to relapse because their immune system begins to detect gluten or other food sensitivities that were masked while they were​taking budesonide.

Regarding dose tapering of budesonide:

When ending a budesonide treatment, although most clinicians recommend tapering the dose, most of them don't recommend taking the dose reduction tapering far enough to be optimally effective. The experiences shared by many budesonide users who are members of our discussion and support forum, show that longer, more drawn out dose tapering is far less likely to result in a relapse.

When the prescribed treatment tapering ends (one 3 mg capsule per day), most users begin taking a 3 mg capsule every other day, for a week or so, followed by a capsule every 3rd day for a week or so, followed by a capsule every 4th day for a week or so. And many users go on to take a capsule every 5th day, or 6th day, or even longer. And any patients who don't feel secure when tapering at that rate, tend to stay at each dose level longer, for example, at least a couple of weeks before going on to the next level.

In addition, anyone who feels that they need something extra to help them remain in remission as they taper off budesonide, taking a daily over-the-counter antihistamine for a couple of weeks after they stop taking budesonide, usually helps to maintain remission when ending a budesonide treatment.