Humira & Hope – and Despair: Annette’s Story

August, 30, 2013 | 2 Comments


  1. Annette, thanks for writing this – and I hope the treatment continues to work for you!

    I agree with you and E-Patient Dave: “Give us the damn data!” And I’d add a comment from Sean Ahrens, who founded the online community Crohnology: “The Right Stuff Isn’t Being Studied.” The best approach to auto-immune diseases would be to find out what’s provoking people’s immune systems to flare up and start attacking their own tissues in the first place. Unfortunately, that wouldn’t lead to the development of profitable products … so that’s not where the research dollars go.

    Producing medicines that suppress the immune system is a much riskier strategy—it’s like fiddling with the brakes on your car. It might cost you a couple of minor fender-benders, or it just might cost you your life. It may be the best option right now for people with severe rheumatoid arthritis. If so, the right to know is at least as important for those who take Humira as for those who might decide it’s not worth the risk. Many of the most serious risks could be made more manageable, if only patients knew what to look for. That’s certainly true with skin cancer, which can often be treated easily if caught early but be life-threatening if it’s not. The same is true of some lung infections like histoplasmosis.

    In that way it reminds me very much of the antidepressant situation. How many of those who committed suicide would be with us today if they’d just been given a simple warning: “Listen, there’s a good chance this drug will make you feel better … but there’s a small chance it might make you very nervous and upset, or give you strange thoughts. If that happens, call the doctor right away – and be aware that it’s not you, it’s the drug.” There is no excuse for the failure to warn.

  2. Even though the dangers of antidepressants particularly SSRIs have now been outed there is still much denial by GPs and Pharma that it’s the drugs.

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