Patients Helping Patients Help Doctors Help Patients
Posted by GI Monitor
by Brett Shamosh
After we recently launched “Socialize”, our social component of GI Monitor (mobile disease management app for Crohn’s and Ulcerative Colitis), we noticed some extraordinary events. Conversations were happening as patients were experiencing symptoms and logging them in real-time. Below is a very simple real world example of the potential for this type of combination.
Use of a mobile tool to track symptoms and meds led "carolgodschild" to notice that her symptoms and MyQOL score worsened when tapering from 40mg of prednisone to 10mg of prednisone. Upon noticing the worsening symptoms, "carolgodschild" wrote a quick post to share the experience with fellow GI Monitor users. Reactions revealed that other users had experienced similar regression when tapering prednisone at those dosage levels. I jumped into the conversation as well to explain that my doctor and I discovered I had a 15mg tolerance to prednisone. An hour and fifteen minutes after the original post, "carolgodschild" was armed with questions for her doctor and posted “Thanks y’all. I’ll call him now.” See part of this thread below. UPDATE: "carolgodschild" called her doctor and realize it was a communication breakdown. Per the doctor, (s)he was supposed to be tapering by 10mg at a time.
Prior to the advent of mobile and social technologies, how long would it have taken "carolgodschild" to:
1. Realize her worsening symptoms
2. Connect the worsening symptoms with a medication change
3. Get educated
4. Take action
This is just one example of how the combination of mobile monitoring and social activity leads to action.
Steroid Dependence
It's terrific that patients are talking to patients like this and the "group think" can be very helpful. A few points for everyone:
1. remember that IBD is quite individualized, not only in the type of disease (Crohn's or UC) but also in the extent, severity and RESPONSE TO THERAPIES. All of these variables may be at work when a patient fails a prednisone taper.
2. the term "Steroid responsiveness" means that when given steroids, the patient achieves symptom control and even laboratory improvements.
3. the term "steroid dependence" means that when tapering, a patient reaches a threshold value at which point they have resumption of active symptoms.
4. there is no evidence that tapering more slowly can help a patient avoid steroid dependence IN THE ABSENCE of a steroid-sparing maintenance strategy. So when a patient fails steroid tapering, it is due to the absence of a steroid-sparing therapy, the chosen steroid-sparing therapy is not working at the right dose or hasn't been given enough time to work, or that the steroid-sparing therapy just doesn't work in this person's individual disease.
5. what therapies are steroid-sparing? Azathioprine and 6-MP are (in Crohn's more than UC, but definitely in both). Infliximab, adalimumab and probably certolizumab are (Crohn's and UC). Best evidence is with infliximab, but probably true for all. Methotrexate is (Crohn's only).
6. the last caveat is that steroids are associated with infections much more often than other therapies. It is possible that while on steroids, a patient develops C. difficile infeciton or some other complicating feature. in this case, that should be diagnosed and treated immediately.
As you can appreciate, this can be complicated. Hope this information helps, and again, it's terrific that everyone is supporting one another!
Wishing you all very good health,
Dr. Rubin