I did labs this morning and was a little afraid that my blood tests wouldn't reflect how well I've been feeling...
But my sed rate IS FREAKING SIX.
It went from 40 to 6!
I switched rheumatologists so that I could get on kineret. I knew that, eventually, this drug would be my goal. It has helped SO MANY people with SJIA and periodic fever syndrome and other autoinflammatory diseases.
I switched rheumatologists because my old one didn't want to use this drug. The injection site reactions were too big of a problem and it didn't help other patients they'd had on it - other patients who weren't SJIA or autoinflammatory btw. They were treating me as if I had a different JIA type.
If it was just between oligo and polyarticular, that would be one thing. The same drugs for the most part are used. Systemic is a different beast. MTX doesn't generally work for us and the TNF drugs only buy time.
I did see minor improvements when I was on Humira & Enbrel, but they both quickly quit working. The same with Cimzia. You can kind of see that here. The dip at the end of June 2012 was when I was on Enbrel and Arava, which I had to stop due to liver damage... and that's where we see the elevation in late 2012.
I had a rough go with some
This is all so surreal. I cried for a good while the other night because I noticed, while fidgeting with my toes, that they were so malleable. Turns out they weren't swollen for the first time in 22 years! They were normal toes!
I had a similar moment with my ankle on the same foot.
And I even wore wedges the other day - five years to the day that I got my handicapped placard and said I give up (not that getting a placard means that - I literally put "I give up Arthur. You win." on facebook).
My new rheumatologist is amazing. I love her so much, not just for this but for really being a partner in my care and a friend.
I can't help but wonder though how many more drugs I would've failed with my old rheumy before they considered this. I wonder why I wasn't being treated with the right drugs. I wonder if it would be wrong (I know it would) to send them a message about how much better I'm doing now.
I'm so glad I stood up for myself. I'm so glad I had other ePatients telling me to be my own advocate. I'm so glad I had support to make all the changes I've made in my life in the last two years. I believe all these changes have gotten me to this moment - so close to giving Arthur the KO.
I'm going to go back to crying in my office.
Lovely little daily shot.
I fucking love you.
Please stay working.
Get me into remission.
Make me better.