I’ve felt
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.
Clinical
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
work.
But the
reality is, in the clinical trial of life, you are always an N of 1.
No matter
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
yourself.
No two
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.
But again,
the reality is, in the clinical trial of life, you are always an N of 1.
Having
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.
When my
rheumatologist told me to get a pneumonia vaccine, I did so without question. I
ended up getting cellulitis and almost lost my arm.
You are
the only expert in yourself. Even when you’re body betrays you and has gone
rogue, you still know your body better than anyone.
So if you
approach a clinical trial the way you approach any other treatment, or vice
versa, it normalizes it. It doesn’t make it as scary.
Because in
the clinical trial of life, you are always an N of 1.
Doctors are our paid consultants. They provide us things we cannot get otherwise. Knowledge, experience, judgement among them. But in the end we are after all the ultimate judge. We have to be the ultimate judge for ourselves. We are the N=1 (my new favorite term) of our health.
ReplyDeleteThank you for blogging with us this week Leslie !!
Yes so very true I have just been told I need foot fusions on both feet and left ankle for Servre arthritis I am dumbfounded as xrays have shown going for appointment in 2 weeks to orthopedics.
ReplyDeleteIrene.
Thank you for the blog. The pain of my RA is brutal at times....and I find it hard to express my pain... I always tell people I'm fine. It's good to hear from others with this disease,and here their stories....
ReplyDelete"You are the only expert in yourself. Even when you’re body betrays you and has gone rogue, you still know your body better than anyone." very wise lines
ReplyDeleteI'm reading in fear. Yet I know that knowledge is power. As I've been on this journey for 3 years. The flares have been worst than my 4 c-sections. Three of them included SEVERAL hours of intense labor, total rotator cuff repair, and joint replacement. None, prepared me for this type of sudden pain. I'm so hoping for a cure. So far no biologics have been used. Insurance pays very little. My body has rejected Methotrexate. Now I'm trying Sulfasalazine. It's also a journey.
ReplyDeleteHi! I, too, have a diagnosis of RA and Lupus. It’s been 3 yrs since diagnosis and we have yet to find a medication combo that truly works for me. How is Does your team treat Lupus? Humira caused me great issue. Sulfasalazine does help some. CJ
ReplyDeleteHello! I have very recently been diagnosed with RA. I feel n stay so depressed, shocked n angry. My body hasn't tolerated Hydrochloriquine n methotrexate well n no steroids because I am a diabetic as well. I am religious n spiritual. Suffered n almost died with GSW in 2005, but made it.The pain of my RA is the worst. Life has stopped for me. Doctor suggesting Enbrel which scares me so n has yet to try me on other DMARDS before jumping to Enbrel. I don't feel this is wrong. Any offer of help or hope to enable me to continue the fight? Very disappointed with this Rheumatologist. Please help.
ReplyDelete