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The nocebo effect

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Posted 2/24/2015 2:08 AM (GMT 0)
Just like placebo, there's an equal nocebo to possible side effects. Interesting.

http://www.bbc.com/future/story/20150210-can-you-think-yourself-to-death

Take heed and apply meditation!
Posted 2/24/2015 3:27 AM (GMT 0)
I always thought some of the reports of side effects here were nocebo, but I did not know the word. Just seems like the most drug-negative folks, or those most afraid of side effects, seem to report more intolerance.
Posted 2/24/2015 4:03 AM (GMT 0)
I think I experienced this with imuran. Probably should limit the content I read about side effects when I start new meds, since they vary from person to person.
Posted 2/24/2015 2:52 PM (GMT 0)
Sometimes I worry about this because I read so much about this disease and treatments. I was so fearful of going on azathioprine because of the things I read about side effects, but then when I didn't have any issues the first month I was on it I was relieved. Unfortunately, I started feeling bad when my dose was increased the 2nd month and it turned out that it was affecting my liver and I had to stop taking it. I don't think that I manifested that outcome though because I genuinely wanted it to work and after having no side effects at all the first month I thought my fears had been baseless.

I think it's good to be aware of potential side effects, but it has to be kept in perspective -- not everyone gets them -- in fact, most people don't get them -- and when we are sick and need medicines the potential benefits have to be weighed against the risk of doing nothing because of fear of something that may or may not happen. I may need to go on biologics soon and am very scared, but I am more scared about what could happen if I don't

Fear is human, but we also can't let fear control our lives. hmmm ... that doesn't just apply to medicines ;)
Posted 2/24/2015 3:10 PM (GMT 0)
I am not sure how to prevent a nocebo effect other than to isolate yourself and not research anything. The article makes it sound like just knowing about potential side effects can make them happen. But if that were the case few of us would be able to take any meds because we're all pretty aware of what these meds can do to us.
Posted 2/24/2015 4:11 PM (GMT 0)
I think nocebo tends to strengthen out of anxiety and fear. If you're afraid of the side effects happening, there's nothing you can do to prevent the nocebo effect. Trying to prevent it will probably strengthen it. Best to just accept that it is happening and accept the fear, which meditation does help with, like zengrrl mentioned. That's how I seemed to get over the nocebo effect I had with imuran.

Also, generally limiting reading about people's experiences with drugs helps. I think reading multiple horror stories is more powerful than simply hearing about side effects from your doctor.
Posted 2/24/2015 4:23 PM (GMT 0)
One thing I discovered about UC long ago is the more research you do the more everything contradicts itself so when someone comes on here proclaiming they have the cure for all with UC, I know better. To me this means there really is no right answer to anything, mostly due to everyone's case being different. I respected my GI a lot when he told me in the very beginning that there was a lot of good information out there for me to learn about UC. To me this meant he was telling me that I was screwed and that there wasn't anything he could do for me. I appreciate the truth a whole lot more than some doctor blowing false sunshine up my butt. He's still my GI today and I'm doing pretty darn well.
Posted 2/24/2015 4:34 PM (GMT 0)
Gary, I have come to realize you view is more pessimistic than mine. Not understanding something exactly, or having variation in individual response and prognosis, does not equate (in my opinion) to scientists having absolutely no idea what chases UC, or everyone being completely different with no rhyme or reason, or doctors just playing guessing games with patients.

Just saying things are known, and there are best practices that help many folks. There are also some common issues and approaches to symptoms. ... etc.
Posted 2/24/2015 4:49 PM (GMT 0)
I guess it all boils down to my first autoimmune disease (ITP, where I was outright lied to a lot by the docs) and in having UC. I learned that if I wanted to get better I had to do the work myself. No doctor was going to even try finding the cause or the solution, other than what is in the textbooks they use (which state that there is no known cause and no known cure for autoimmune disease, other than surgery for UC). I discovered on my own with ITP the general reason for my disease and the solution which has kept me in remission for 15 years. I had to take the doctors along for the ride because they were just humoring my ideas. As far as UC goes it wasn't until I paid American Gut for an analysis of my stool that I finally found the right path for me. GI's don't even bother doing this. They can't think past their self imposed box from their textbooks. I want a Sherlock Holmes on my side but I learned that I had to be my own Sherlock Holmes because the doctors weren't going to do it for me.
Posted 2/24/2015 5:00 PM (GMT 0)
For me, especially while I was on Prednisone, applying meditation really helped to sort out fears, then take it deeper to sort which thoughts/feelings emotions stemmed from some kind of physiological/biological response, etc. I was amazed at how the body's response to a drug (and a disease) could cause such disruption to one's thought pattern. I was swarming with negativity and fear of death and so surprised by that! Because I'm normally quite light-hearted. Now I wonder about the strength of the nocebo effect. The mind is so powerful. It needs constant tending, cultivating....we can get yanked around so easily and fooled into believing what we are thinking! Thinking and emotions are human traits, but there's a "higher" level we can reach where the thoughts and feelings just come and go like clouds. Never attach to them. Laugh at them! HA! but being able to do that takes a lot of discipline.
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