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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!

5 responses to “The Sed Rate Saga: Headed in the Right Direction”

  1. Another great post, Dana. You definitely are a trend-setter in a new age of healthcare. What I wonder, however, is what the normal baseline of ESR is in those without RAD? I assume it would be reported as a range. And what's the standard error of each measurement (error bars), so we could be sure a slight trend up or down is different from normal variation or reporting error? This would not diminish in any way your elaborate tracking process, but simply solidify it. Your last paragraph is the crux of this post, regarding differences in biomarkers for different RAD patients. I believe at least one of the answers to he question you pose lies in the artificial, 19th century clustering of millions of patients into a single disease category that's a figment of imagination. I provide an explanation of this position in a comment on a recent blog post at RAWarrior.com. Once understood, this alleviates confusion about differences among “RAD” patients. Bob

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  2. I've been kinda following your blog from time to time in the mornings and its just great to hear that things are on the up and up! Hopefully your SED rate continues to improve!

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  3. Thanks! Good questions & would be good to add to chart. I know there is a formula for determining what your “normal” ESR should be; not sure what the standard error would be. Though my doctor stated 25 as his baseline — anything over that, he considers “elevated” (in RA patients, at any rate). Per the formula, mine should be less than that. And from my chart and experience, I'd come to the unscientific conclusion that ideal for me is <= 10. Agreed on your second point. And while recognizing that we don't all have the same disease can make sense out of why we don't all respond the same, until we determine what lies at the heart of those differences, it doesn't do much in regards of better, more targeted treatment. Hopefully a new age in medicine will soon be upon us.

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