How much do we need to know about drugs?

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Date Joined Feb 2007
Total Posts : 1010
   Posted 10/18/2007 6:29 AM (GMT -7)   
I was just thinking about the tysarbi post (drug trial periods have been extended. The drug is associated with development of deadly central nervous system disease)

What do you guys think? How much should patients know about the medications their physicians want them to take? If we know everything are we much less likely to take what's prescribed and will that negatively affect outcomes? Is a little bit of ignorance good for us?

Just this week I was reading a study looking at how the benefits and risks of Remicade are perceived by crohn's patients. Turns out patients over-estimate its therapeutic benefit and vastly under-estimate its risk of a major adverse effect (lymphoma). Even the parents of patients are not well informed, according to the survey. Compared to published literature, patients and parents of patients overestimate the benefit of infliximab and underestimate its risks. For instance fully one-third of respondents were not aware that lymphoma was a risk associated with Remicade, but when asked if they would take a hypothetical new(unnamed) drug that carried a risk ratio equal to the actual risk from taking Remicade nearly 70 percent said they would not take it.

30+ years living with Crohn's.

Post Edited (belleenstein) : 10/18/2007 7:33:53 AM (GMT-6)

Veteran Member

Date Joined Dec 2006
Total Posts : 559
   Posted 10/18/2007 7:43 AM (GMT -7)   
I think we do need to know a lot, because so many physicians don't even bother to warn their patients about possible side effects. I've posted a couple of times about my experience with prednisone - I started losing my eyesight, and nearly went blind due to prednisone-induced glaucoma. I had no warning from my physician, so I continued to take the prednisone even as my vision was failing. When I finally went to an eye doctor, he asked me what drugs I was taking and I mentioned prednisone. He told me to stop taking it at once. I recovered, but I could have been permanently blinded had I waited just a little bit longer.

Prednisone, Budesonide, Remicade, Humira and Imuran all carry serious risks. Patients should be well-informed and know what side effects to look for. True, most patients do not know enough to be their own doctor, but ignorance is not always bliss.

Crohn's since 1988
3 resections

Veteran Member

Date Joined Jan 2003
Total Posts : 1152
   Posted 10/18/2007 8:06 AM (GMT -7)   
Read and learn as much as you can about all of the drugs. You are your best advocate, and certainly the best advocate for your children. Be informed and make informed decisions! know enough to have the proper educated conversations about your treatment with your doctors. They should be your guide not your decision makers!

Veteran Member

Date Joined Dec 2006
Total Posts : 1986
   Posted 10/18/2007 10:01 AM (GMT -7)   
I think a lot of doctors are educated about drugs by the representatives of drug companies who play down the side effects. I had a rheumatologist that told me that Remicade absolutely could not cause joint pain, and he believed it 100%. All he had to do was read the literature and/or the latest studies, but he chose to let the drug reps tell him about it instead so he could be in denial. It worries me that his RA patients who may be complaining about joint pain while on the drug may not be getting the correct treatment.

49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, back on 6MP for maintenance, hoping for a long remission from this last surgery. 

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