Disease activity and a new check up

The calendar has just flipped over to February and it's time for a new check up at the rheumatologist. I'm a month into the induction treatment and it seems like this is going in the right direction. I´m feeling increasingly better and this weekend I even went skiing for 10K in -13 degrees, without the stinging sensation in my chest. This time I´m cruising to Drammen on my own, no one has to drive me. The only thing I'm a little nervous about today is the result of the antiphospholipid test that´s been taken. Last check-up, I was told that I have an autoantibody (SSA) that can potentially cause a heart blockage in the child during pregnancy. But I have discovered that there is only a 2-3% increased likelyhood of this happening. So if I get a negative result on this antiphospholid test, then it would definetly feel like I´m out of the woods for now.

While I wait to be called, I read through the questions I have written down in before this apointment. I am particularly curious about disease activity and where I am on the scale. It seems that there are several ways to measure it, but the word SLEDAI (SLE disease activity index) has appeared the most times. A score is set from 0-105, with 1-5 = mild / low, 6-10 = moderate, 11-19 = high and anything over 20 = very high.

This time I get through the appointment without shedding a single tear, but unfortunately it turns out that my blood test results don´t quite match how I feel and what I expected / hoped to hear .. Although my general condition is good, they are not completely happy with the test results for my kidneys and the inflammation has not gone back as much as they would have liked. The nephrologist has therefore recommended that a kidney biopsy should be performed to classify the inflammation and assess whether the medication I am currently on is sufficient to treat it quickly enough. I feel like I'm collapsing in my chair. Turns out these woods Are deeper than I think they are. Of course, it also turns out that the antiphospholipid test is positive. This result is not confirmed positive, until a new test has been taken in 12 weeks, ie there is still hope I will get a different result. When I ask about disease activity, I get to see the form used to assess this. When I came in this Christmas, the disease activity was high, while I am now down to moderate activity, and that is for the most part because of the kidney situation. I guess the ride back home won´t be all puppies and rainbows after all ..

​Source: Mosca, M., Merril, J. T. & Bombardieri, S. (2007) Assessment of Disease Activity in Systemic Lupus Erythematosus.