at the Water's Edge

Living life and learning all I can along the way!

The Sed Rate Saga: Headed in the Right Direction

It’s time for my next update to my ESR chart.  You can read about the Sed Rate Saga and my switch from Enbrel to Humira to treat my rheumatoid autoimmune disease back in December.  I’ve been tracking my Erythrocyte Sedimentation Rate (ESR / Sed Rate) –a measure of inflammation -- since that time, trying to determine how well it correlates with my symptoms (quite well, as it turns out!), and subsequently using it as a measure of my disease activity.  

Last fall brought in the highest Sed Rates I’ve ever had (44).  After switching to Humira bi-weekly injections, my Sed Rate raised slightly.  This led to an increase in my dosage to weekly injections.  After two more months on Humira I was starting to finally feel consistently better.  When I had my Sed Rate measured in the beginning of March, though, it had only fallen two points since the last time.  That was slightly discouraging news to me, because I thought I’d been feeling better and was hoping that would be reflected in my blood work.

This month, I was hoping for a greater drop as I’ve now had over a month of consistently feeling well – so long as I take ALL of my meds as prescribed: that’s Humira injections weekly, Plaquenil (hydroxychloroquine) – 2 pills/day, and 500mg of Naproxen twice a day.  I do notice if I miss a dose of Naproxen, so I wasn’t really positive what my blood work would report.  But, lo and behold, progress was indeed reported!  With their usual promptness, my doctor’s office called me on Wednesday, the day after I had my blood drawn, and informed me that my sed rate was down to 33.  That’s 9 points down from March, and a move in the right direction!  For me, this just helps confirm that I am indeed experiencing improvement and that it’s not just me “getting used to” my symptoms or not remembering properly exactly how I was feeling.  33 is still considered “elevated” and is higher than where I’ve traditionally held – so I’m hoping to get back down to the teens and correspondingly see my wrists and hands continue to improve.

Here’s what’s interesting, though.  My sed rate seems to be very well correlated with my symptoms, to the point where any slight increase in symptoms will register in my blood work.  Not all patients are like this, though.  In fact, many patients experience pain and even swelling while never experiencing an elevated sed rate.  What does this mean?  It means it’s not a perfect indicator, and is another demonstration of how RAD can be so different from patient to patient (or perhaps the patient’s response to the disease is different).  

What I am curious to know is if the fact of whether or not ESR correlates with symptoms in a given patient is indicative of anything else.  For example, if they don’t correlate, is that associated with harder to treat disease?  Or are other markers of inflammation likely to correlate with symptoms if ESR does or doesn’t?  As relates to me, I wonder if my doctor tested other markers of inflammation if they would correlate just as well.  I had my anti-CCP tested twice to my knowledge (and it was high both times), but it’s not regularly tracked.  And I think that’s it.  I have not found any record of my CRP ever being tested.  I’ll have to double check my initial diagnostic labs to be sure.  I may just have to see if my doctor will humor me and order some other labs to satisfy my curiosity!

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Hi there! My name is Dana and I live in West Michigan with my husband, Tom and our dog Copernicus. I created this space as a place to share the things I learn along this journey I call life. I work in marketing and I'm a sort of Jane of All Trades, interested in all things nature, gardening, cooking, exploring and learning new things. This blog is a conglomeration of my interests, hobbies, life and life lessons. Thanks for stopping by!