I have severe IBD (Inflammatory Bowel Disease) – What are my choices? – ibdandme.org

This is a very exciting time for IBD therapeutics. New drugs, potentially as effective and safe as biologics, are on the horizon. The approval of tofacitinib (“tofa”, brand name Xeljanz), the first of a class of Janus kinase inhibitors (“JAK inhibitors”), by the FDA is expected later in 2018. Until then, patients with difficult to control ulcerative colitis and Crohn’s disease have only biologics to rely on. Biologics does not mean that they are more natural than small molecule drugs, in fact, quite the contrary, they are recombinant (genetically engineered) therapeutic proteins. As proteins they get digested in the stomach, and can’t be taken orally. They need to be given intravenously or under the skin (subcutaneously)

Which biologic is right for me?

An increasing number of gastroenterologists believe in shared decision making between patients and doctor, especially in IBD. One of several reasons is that there is simply not one best biologic out there that beats them all. Head-to head studies were never done, sometimes one biologic works when the other one has stopped working, they are not all equally effective, some of them must be given more frequently than others, some of them need to be given intravenously, others under the skin, and the risk of side effects, both serious and minor, such as skin rashes, differ.  Some people hate the idea of using needles on themselves, others would rather not waste time going to an infusion center.

Enter IBD and Me – ibdandme.org

As outlined above, there are many choices to be made. Some of them are purely medical or scientific, others are a matter of personal preference. Choosing intelligently, can however strengthen the therapeutic alliance between doctor and patient, leading to better outcomes.

IBD and me is a new informative website for patients with IBD.

 

A group of researchers from Cedars-Sinai Medical Center in Los Angeles, CA, has conducted research on 640 patients with IBD to get a clear understanding which of the factors mentioned above are important to them. The method is called conjoint analysis, and the results were converted into a questionnaire that patients can use to get clarity about what they value most and what less. They can share the findings with their doctors and this should result in an excellent basis for shared decision making: https://ibdandme.org/.

I have tried the questionnaire and like it. It’s no plaything, you have to set some time aside and concentrate – it’s a little bit like getting a prescription for glasses “Is this better for you, now how about this” – but the results are very helpful as a basis for an intelligent discussion with your doctor. In addition to the questionnaire the website contains useful and well-written information about all classes of IBD therapeutics.

If you think that your IBD could be under better control, consider making an appointment with Dr. Klaus Gottlieb in San Luis Obispo, CA, or Templeton, CA.

Almario CV, Keller MS, Chen M, Lasch K, Ursos L, Shklovskaya J, Melmed GY, Spiegel BM. Optimizing Selection of Biologics in Inflammatory Bowel Disease: Development of an Online Patient Decision Aid Using Conjoint Analysis. The American journal of gastroenterology. 2017 Dec 5.

 

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