Reflection on my lowest sed rate ever

My sed rate today was FIVE. That is the lowest it has EVER been since it was tracked starting in November 1993.

(For those outside immune system things, sed rate is a way to measure inflammation in the body. Normal results are between 0-20.)

I haven’t updated this graph in a while, but this is my sed rate from 2010 to 2017.

line graph of sed rates from 2010-2017 showing markers in the mid20s to high-40s until 2015 when it drops to normal levels

Yes, I still keep an excel file with my labs because I’m a nerd.

I started Kineret the last day of July 2015, and this graph clearly demonstrates how integral that medication has been for me.

I had to switch insurances and rheumatologists to get on this med since my previous doc wasn’t treating me for SJIA. Instead, they were treating me for polyarticular. It’s clear that some of the things we did helped because, yes, I have always had multiple joints involved. However, the medications weren’t targeting the right areas on their own.

That dip in 2012 is when I was on Enbrel and Arava. I felt like shit all the time, and the Arava quickly began damaging my liver. It had gotten so bad quickly that I had to stop it immediately. We had already tried methotrexate – twice – and I couldn’t tolerate it. I stuck with Enbrel for a while as I tried to get my fibro under control, but changed in early 2014 to Cimzia which clearly didn’t do much of anything.

None of that is even comparable to being a kid and having a rate in the 60-80 range regularly. No wonder I was hurting all the time, especially without treatment.

I still get enraged here and there at my previous doc. She refused to try Kineret with me, despite me bringing in case studies, journal articles, and personal accounts. Frankly, she wasn’t willing to entertain any of the SJIA meds because most of the research was on kids. [Insert snarky comment about how we need research on adults with SJIA because I know I’m not alone here.]

Old doc and I were on a research call together a few weeks ago. I really wish there had been an opportunity to call out this misstep without names. Alas, there wasn’t – and I’m trying to do better at being professional. I suffered for nearly three years though. I absolutely could have easily died from my SJIA during that time, let alone complications or my mental health.

For now, I’ll happily celebrate this low level of inflammation and consider writing my old doc to help her do better with future patients.