this for a long time, but I’m finally writing it down, because I think it’s
good advice for newly diagnosed patients, and I wish someone would have told me
something similar when I was first diagnosed.
trials are scary. Many patients feel they would only participate in a clinical
trial if they were desperate, in a last ditch effort if no other treatments
reality is, in the clinical trial of life, you are always an N of 1.
how tried and true a treatment is, no doctor can ever adequately tell you or
know how you will react to a medication. Sure, by prescribing something, they
may be acknowledging that the perceived benefits are greater than the perceived
risks, but there is never really any way to know for sure until you’ve tried it
patients are alike. When you’re first diagnosed, everything feels scary and
unknown. And you look for common ground, for people that are going through the
same things that you are. And that’s great. It’s 100% necessary to find
patients like yourself.
the reality is, in the clinical trial of life, you are always an N of 1.
both lupus and RA, I took Humira with the acknowledgement that it could make my
lupus worse. However, I never imagined that six months into treatment, I would
suddenly have the worst lupus flare I had ever experienced, which left me
almost completely bedbound for two weeks. When I finally realized that I
couldn’t brave the storm any longer, my PCP suggested that I see my rheumatologist
as it sounded to her like the flare may have been the result of Humira.
rheumatologist told me to get a pneumonia vaccine, I did so without question. I
ended up getting cellulitis and almost lost my arm.
the only expert in yourself. Even when you’re body betrays you and has gone
rogue, you still know your body better than anyone.
approach a clinical trial the way you approach any other treatment, or vice
versa, it normalizes it. It doesn’t make it as scary.
the clinical trial of life, you are always an N of 1.
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