1/20 Dermatomyositis Is Back

I’m not sure how to categorize today…good, bad, or indifferent. Knee jerk would say bad. Josie’s dermatomyositis seems to have flared to a degree higher than we’ve seen in months. Her skin under the arms appears worse…quite a bit worse. Her fingers and hands are looking mottled (a term used to describe an appearance kind of splotchy differing in color). Her toes have areas of redder appearance on the tips. Her nail-fold capillaries are showing signs of inflammation like in yesterday’s picture.

This is not completely unexpected though. Josie’s Cytoxan was stopped and replaced with Cellcept. We knew that Cellcept was on a trial basis with Josie this go around. Dr. Vehe said that by Sunday we would know what the story was. Now I think it’s pretty clear that Cellcept is not the answer. Depending on what happens the next 24 hours Josie may get a dose of pulse steroids and a pulse bolus of Cytoxan. Daily Cytoxan may start so after that if things don’t stabilize very soon. Here dermatomyositis is getting a little bit out of control and we do not want another raging flare.

Josie was generally feeling pretty crappy today. She was throwing up often with diarrhea and a slight fever (nothing like yesterday though). Those little spots on her skin in the pics form yesterday were determined to be petechiae. Petechiae are small red or purple spots on the body caused by a minor hemorrhage (broken capillary blood vessels). There’s no harm with them and they’ll go away in time. The thought is that a virus of some kind has triggered the fever spike and aloes caused the petechiae.

The Infectious Disease folks were in and they wanted a C Reactive Protein (CRP) test done. CRP is an inflammation marker and if it’s high the Infectious Disease people think it would most likely be caused by bacteria. Although dermatomyositis flares also show elevated CRP levels. The lever tested out at 15 today which is lower than yesterday’s 19. This is good and may lead to having her antibiotics stopped if nothing grows out of the cultures over the next two days.

Liver is still a touchy issue. They’ve decided to perform a liver a biopsy during the big surgery in February…long time from now. A liver biopsy will give the GI folks a clean piece of liver with which to experiment. Moving forward from here, liver tests are ordered for Sundays and Wednesdays. Tomorrow’s liver tests should be interesting.