at the Water's Edge

Living life and learning all I can along the way!

Tracking My Progress

A couple months ago, I decided to get serious about keeping track of my medical records and really taking ownership in the management of my health care. It is my body, after all.  This led to me requesting files from several doctors, the creation of at least one spreadsheet and a chart (because what are spreadsheets without charts?!) to track my ESR (sed rate).  And, thus began The Sed Rate Saga.  

My doctor(s) has historically tracked my ESR or Erythrocyte Sedimentation Rate (Sed Rate) as a measure of inflammation and indicator of disease activity.  There are other biomarkers that are sometimes looked at in rheumatoid autoimmune disease, but for some reason this seems to be the only one that has been tracked consistently for me (I’ll have to ask about the rationale another time).  

I do have a couple of records of my anti-CCP (or ACPA) being tested.  Back in October of 2004, I believe they tested this as a part of my rheumatoid arthritis diagnosis, and the result came back at 315.  Anything over 60 is considered “high” or a “strong positive”.  The only other reference I have to anti-CCP is from 2007, where it is simply noted as being over 100.  I’d be curious to test again, just to see what comes up.

In the mean time, I will be looking at my ESR and trying to determine how strongly my blood work correlates with my symptoms.  So far, it seems to be mostly on target.  Only, this week I was a little surprised.  Firstly, I learned that I had been told incorrect information in January, and that my ESR was then at 44 (versus 41).  Only slightly off, but still important to note – because that means it did go up slightly when I switched from weekly Enbrel to bi-weekly Humira.  

After a month of bi-weekly Humira, I switched to weekly doses, and have now been at that for two months…giving me a total of three months on Humira.  My symptoms seem to be improving, as I’ve been more stable the last few weeks, and am definitely gaining range of motion and strength in my wrists.  Given this improvement, I was guessing (hoping) that my ESR would have fallen down to near 30.  Wrong.  I had my blood work done yesterday, shortly after my rheumatology appointment, and got the results back today: 42.  Ugh.  That’s hardly progress, though I guess we’ll count it anyways.

Click the chart to view full-size image.  Also note that I added breaks where there was more
than a 1.5 year lapse in data to give a more accurate visual.

Comparing my current symptoms with past symptoms and ESR results, I suppose my symptoms are worse than they were two years ago (slight hand flare), so I suppose my inflammation should show higher than that.  I have given other reasons why my knee flare felt way worse than my current wrist flare (you put weight on your knees ALL DAY; I mean, if you want to stand or walk, that is…).

At any rate, I’m just trying to figure out if there are any nuances to this correlation between my blood work and my symptoms.  The more I track and the longer my chart gets, the more I’ll know!  And, since my doctor seemed to really appreciate this information, I guess I’ll be sharing this with him so he’ll be better informed, as well.  

I’ll be getting more labs done in a month to check my progress since we’ve added plaquenil, and I’ll update my chart again then!

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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!