Hi rheumy family! So what do you think?
For any unfamiliar with the meaning of nocebo the wiki meaning is under here!
"Nocebo. The nocebo effect is when a negative expectation of a phenomenon causes it to have a more negative effect than it otherwise would. ... Both placebo and nocebo effects are presumably psychogenic but also produce measurable physiological changes as well as changes in the brain, the body and behavior.
Nocebo - Wikipedia"
So I was put on Benepali after doing well on Enbrel for around 3 years.
Bottom line is Enbrel works for me, Bene made things worse. With Enbrel I had the upper hand over my AS though not 100%, and with Bene the AS is on top once more having the upper hand.
Through my research It seems ppl who have switched from a biologics to a biosimilar have had the same experience by and large. Those using a biosimilar out of the gate, seem to have some improvement in RA symptoms but seem to still have some fatigue lingering.
Hmm, why the disparity between the two? Could it be the nocebo effect? Is the answer in which group has further to fall?
Re my situ, I have stopped taking my Benepali(not with any doc's advice)it'll be 2 weeks on Wednesday and I feel great. I was having a lot of undesirable side effects on it after 5 months taking it. Now is the first time in 7 years that I am on no meds, yikes! I'm waiting to see Doc to get back on my first generation biologic Enbrel. The daily lingering headaches have gone, the fatigue, cold symptoms of cough, stuff and blocked nose, plus hot sweats, muscle aches, joint aches have all but left. I feel quite good!
For me I don't feel the nocebo effect has been at all at play. Reason being that It was only after the previous wkend to this that a friend quizzed me, he actually said "Have you changed any of your meds?" To which I said.."Na" It hadn't even occurred to me in the 5 months that I was taking Bene that this could be an issue.
Now flying solo on no meds isn't the answer I'm sure, and I know I'm living on borrowed time feeling good for now. My AS will get the upper hand if I'm not set on the right path again soon. It's been an eye opener for me to actually listen to my bodies cry for help, instead pushing the feelings down and putting up with what really was too much. And for having blind trust in what those in white coats have had to say! Similar my ASS!