flare

With autoimmune arthritis (I specify that because osteoarthritis is completely different) symptoms can come and go.  When symptoms are at the worst they are said to be flaring.  It's not something we have really ever experienced until this weekend.

Emily had been off steroids a little over two weeks when we started to notice her rash come back and stay.  It has already been around (I say it is mocking me), but this time it was different because it was more prominent and itchy.

At her last infusion I noticed her lab numbers were not looking good; d-dimer and fertin where on the rise and hemoglobin was taking a dip, all classic symptoms.  So I called the Rheumatologist and asked if the rash and these labs meant that MAS was back.  MAS is macrophage activation syndrome (I wrote about it here) and it is scary because there is a 20% mortality rate associated with it if not treated.  About ten years ago MAS didn’t even have a name; it was a fever that killed because there was no treatment so it’s not something we like.

Sure enough we get a call back, it was MAS.  Hello steroids, it hasn’t been long enough.  We started her again on 2mls per day, not too bad, but enough to invite ‘roid rage back and increase her energy.  It wasn’t enough though, four days later the rash was worse and she was crying it was so itchy…ugh.  So we were told to raise the steroids to 3mls twice a day.  Not that bad, not the 10mls we were on, but it feels like we took one step forward (ending steroids) and two back (6mls a day was months ago).

It seems to be working.  Emily is her old self; she had not been acting right at all this past weekend so I knew something was up. 

Flares are common with this nasty disease and they can happen anytime.  The one thing I find assuring is that for the most part the worst part of the disease is the onset.  So hopefully Emily will never be that sick again.