It’s been a month since I’ve written. For much of that time, I was deep in the weeds, having setback after setback. It was a dark time.

More Ravages of Prednisone

In my last post, I wrote about my lab work showing high cholesterol. The next week, I found out I had high eye pressures and a newly formed cataract in my right eye. Just four months ago, I had seen my eye doctor for advice on dry eye issues. At that visit, my eye pressures were normal and there was no cataract. In just a few months, prednisone impacted all of these aspects of my health. I started really panicking about what the DEXA scan would show, as prednisone also affects bone density.

Insurance Says NOPE!

Then, I got the call that everyone with a weird, life-threatening disease dreads… the claim for my infusion treatments was denied by Anthem BC/BS. They deemed the treatment ‘not medically necessary’, and said I was on the hook for the full $52,000.

Is My Treatment Even Working?

I also had my eight-week post-infusion follow up with my UNC team scheduled for February 6. While my pemphigus issues have improved with daily prednisone, I was feeling unsure whether or not the Rituximab was working. I have continued to develop mucosal ulcers, but they’re less painful and go away faster. I feel better, but I still feel far from normal.

How Can This Be My Life?

All of these things weighed heavily on me. I started imagining the rest of my life being this painful daily battle against a disease that I have no control over. I couldn’t stop thinking about the damage being done by prednisone, and how quickly it was turning my formerly healthy body into one riddled with chronic illnesses usually seen in much older people. What if I couldn’t afford treatments? These worries were topped off with the loneliness of ongoing social isolation I experience as an immunocompromised person. I essentially hit the lowest low I’ve had at any point since I became ill. I questioned daily whether my life was even worth living anymore, because all it felt like was pain.

But each day, I got up and ate a healthy breakfast, exercised, showered, put on clothes, worked my full-time job, and took care of things around the house. I was only going through the motions – joyless, numb, mindless forward steps. I had to keep moving and hoping that the feelings would pass and the situation would get better.

Things Finally Feel Like They’re on an Upswing

• My appointment with my UNC team went well. They believe I am responding to the Rituximab infusions. My response has been a little slower than average, and it might not be a complete response. It’s too early to know for sure, so they’ve gone ahead and scheduled two more rounds of infusions for early summer. I knew this was a possibility, but was hoping it wouldn’t be necessary. They also did an indirect immunofluorescence study on my serum sample. The results showed that I still have pemphigus autoantibodies in my blood, but they’re at the lowest level they can be while still being detectable. My doctor said this news is encouraging.
• My DEXA scan went GREAT! My bones are actually still stronger than normal. This was a huge relief! Things like cholesterol and eye pressures can come down when you’re off steroids, but bone loss and cataracts don’t reverse. Yes – you can take Fosamax to rebuild bone, but that’s more side effects. And, yes – you can have cataracts repaired, but that’s surgery to replace the lens of your eye.
• I got word on Friday that Anthem BC/BS is covering my infusions. UNC Chapel Hill Medical Center handled the entire appeal for me. They have a Claims Denial specialist to advocate for patients, and they were able to successfully make the case for medical necessity. Thank goodness – I didn’t have an extra $52,000 sitting around.

Having some good news for a change has made me feel a bit more optimistic. Honestly, the biggest factor in my mental shift has been the support I am getting from my amazing medical team at UNC. My doctor reminded me that my treatment is a marathon, not a sprint. She also reinforced that I CAN do this and I’m stronger than I think I am. They always give me hope and make me feel confident in my path forward. I love them!

What’s Ahead

• I will have another follow-up test (an ELISA assay) in mid-March to look at desmoglein antibody levels in my blood. The level of these antibodies can often be used to predict the likelihood of a flare.
• I’ll continue to slowly taper off prednisone and hope my pemphigus symptoms stay mostly at bay.
• I have a lab order for TWENTY-TWO tests from my rheumatologist. These tests are a routine annual autoimmune panel and a bunch of tests to hopefully figure out if my too-large red blood cells are from anything fixable. Oversized red blood cells are called macrocytosis, and I’ve had issues with it off and on for many years (including before pemphigus). In many cases, macrocytosis can be a benign/familial thing, but my rheumatologist wanted to rule out anemia, thyroid issues, vitamin deficiencies, and multiple myeloma. I’ll do that bloodwork either later this week or early next week. This makes me nervous, but I’m hoping for unremarkable results.