So, it’s been about a month since my last update. Things are going well enough that I can finally say I’m cautiously optimistic about my pemphigus progress.

I’m down to 2mg of prednisone a day and have stopped using clobetasol completely. My pemphigus symptoms are mostly at bay. There are a few stubborn spots that aren’t fully healed and I’m developing very few and very minor new ulcers. My pain level is much lower, and I’m able to eat everything but really spicy or really acidic food.

I am having lots of joint pain now that I’m without the strong anti-inflammatory effects of prednisone. I don’t think I hurt this much before prednisone, but maybe I just don’t remember? Or, it could be that I completed menopause during the year and half medical mystery and I’m experiencing new arthritic pain that was masked by the steroids. Who knows!

It feels great to have most of my labwork behind me for now.

1. I had blood drawn for the 22 labs that my rheumatologist ordered. Almost everything was normal.
   • My ANA titer was slightly higher than it was a year ago, but my rheumatologist said fluctuations are normal and not really of concern unless other tests come back abnormal.
   • The general tests for inflammation in my body (CRP and ESR) were both well under the threshold of abnormal. I have almost zero systemic inflammation.
   • All the specific antibody tests were negative – like Rheumatoid Factor, Sjogren’s, etc.
   • My thyroid function was normal – they did the full panel with multiple labs
   • I didn’t have any vitamin deficiencies – everything was mid-level normal.
   • My metabolic panel was completely normal – even my fasting glucose (this was of concern, given all the steroids I’ve taken over the past year and a half – I am very relieved)
   • My CBC was the only thing that had a slightly vexing issue – my MCV remains abnormally high. It has been abnormal for about a year. Issues like hypothyroidism, anemia, vitamin deficiencies, alcoholism, and liver problems can cause a high MCV – but those have all been ruled out in my case. My rheumatologist also ran a test called an SPEP that looks at different globulins and is helpful in ruling out multiple myeloma blood cancer. The SPEP was completely normal, too. She’s ordered some more tests, but I might wait a couple months before I go to the lab for another blood draw. I don’t have any symptoms that could be related to a high MCV. It was just an incidental finding on my CBC. High MCVs can be genetic and benign, so that’s definitely a more likely possibility given how many things that have been ruled out.
2. Yesterday, I went to the Quest Diagnostics lab in town and had blood drawn for an ELISA assay to detect levels of desmoglein 1 and 3 auto-antibodies. These are the antibodies that cause the attack in pemphigus. The results will be used as part of decision on whether or not I get two more rounds of rituximab in June.

I’m due back at UNC at the end of April for my next progress check and some decisions about where my treatment plan goes next. Stay tuned!