Friday, October 4, 2019

In the Clinical Trial of Life, You Are Always an N of 1 (RD Blog Week #5)


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.


5 comments:

  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.

    Thank you for blogging with us this week Leslie !!

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  2. 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.

    Irene.

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  3. 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....

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  4. "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

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  5. I'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.

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