~ chicken wings ~ said...
I don't think iPoop is trying to invalidate or minimize your experience or anybody else's experiences - he's trying to reassure people, because many people are on the drugs without issue, or with minor issues that are not really a problem, and as well as that they may have potentially fantastic results on the drug. I think it's only fair to warn people of the risks in the context of the benefits, just as it is only fair to warn people of the benefits in the context of the risks. Applying our best guess of probabilities to the statistics, based on research and studies, is very important to allow people to understand how rare the side effects are. To make posts that recommend people not going on the drug and telling stories about horrible experiences they have had is - again, while understandable if you've had that experience - not always the most helpful thing for the person who wants to learn more info about the drug, even if it seems like it could be.
Correct. I've been attempting to reassure and inform people of actual odds of side effects and also often link out to sources with more detailed statistics.
Everyone agrees the side effects occur, but everything described in this post by the OP falls under rare Rare (less than 0.1% incidence), if one assumes that the drug caused all of side effect that the OP claims (and I and others are not convinced). I agree with the point we blame everything we experience on our current treatment, often unjustified. Correlation doesn't always equal causation.
I strongly believe there's lots of unnecessary fear based on misinformation/misunderstanding of side effects without taking actual odds into account surrounding the various uc treatments from mesalamine, to immunomodulators, to biologics, and even surgery. We get posts daily where someone is suffering from the horrible uc symptoms we all are too familiar with (including mesalamine, is it safe?). People get incredibly scared and delay their treatment when reading horror stories online, do not go to the next level of treatment and they suffer as a consequence, and weigh an anonymous posters comments higher than a specialist-doctor. Despite the fact that the odds greatly outweigh the risks (66 percent chance of remicade helping someone versus a 0.1 or less incidence of side effects is a wager most safe betters will take).
Risks and benefits are an important conversation all doctors should have before starting a new treatment, but many doctors don't do an adequate job, in my opinion. Everyone Google's things and more often than not it's the horror stories that turn up, not successes and that's unfortunate. I don't want to deny anyone anything, rather inform, reassure, and put risk into context. Everyone decides themselves what risks they're willing to take, but informed decisions are better than an emotional and rash one based on a misunderstanding.
If automobiles had as prominent warning statements in commercials, ads, and manuals as drug ads do that you had 1 in 133 odds of dying in a car crash then I think we'd be fearful of them as well. Many things we do daily have much more likely odds of harming us and we don't think of them.
There's certainly value in knowing what can happen in context, as it's very discouraging when a doctor doesn't recognize a mesalamine-intolerance and other like things. To that end, some good stats on actual risks versus benefits is the Crohn's and Colitis Foundation of America:
And hopefully this and my other posts make sense, I'm still on prednisone and therefore a little loopy/brainfoggy lol.