Reddit reviews Beat Crohn's! Getting to Remission with Enteral Nutrition

>What should I expect and are there horrible side effects?

What you should expect:

NNT is "number needed to treat," or the number of people who need to take a drug for one person to derive benefit. The lower this number, the better; for really good drugs (like antibiotics to treat stomach ulcers), the number is 1.1. For really shitty drugs, like some statins, the number is higher than 200; some drugs have an NNT of infinity: they don't actually work.

For Remicade, the NNT for Crohn's is about 3 (see page 12) in the short run. Long-term data are confusing; nobody really knows (except the drug companies, who would probably release this data if it were good for them). For Humira, it's about 7, with a range of 5 to 8. This means 2/3rds of patients taking Remicade will not achieve remission within 10 weeks, as defined by a CDAI of under 150. For Humira, your changes are between 12.5% and 20% of achieving remission.

In terms of risk, both drugs are given black box warnings for their side effects, which may include liver damage, infections (bacterial, viral, and fungal, including tuberculosis), demyelinating diseases, cardiac failure, lupus, lymphoma, blood disorders, etc. You will be required to sign a piece of paper that states you understand these risks, although I seriously doubt anyone will spend much time elaborating upon them prior to asking you to sign it. If you care to trouble your healthcare provider with elaborating upon the risk of developing, say, an opportunistic fungal infection like coccidioidomycosis or histoplasmosis, they will probably roll their eyes.

That said, thousands of people take these drugs every week, and none of these horrible side effects occur to them. But they do happen, and that's why the box warning is such a strong one: these drugs can kill you.

Also note that if you must discontinue TNF drugs, your body may form antibodies; these would make it less likely to be effective if you were to re-start them at some future point in time. Your body may form antibodies to these drugs, causing them to stop working suddenly even if you don't discontinue them.

Humira and Remicade are both the "heavy hitters" for colitis. They are very serious and extremely expensive drugs that should be given weighted consideration prior to starting them. They are big moneymakers for the drug companies, so the pharma reps sell them hard. Compare with un-sexy modalities like enteral nutrition, which works 50-70% of the time to induce remission (source: Oppenheimer, in her Beat Crohn's! book), and have no drug reps.