… my rash re-appeared last week. Head to toe. Most of my face, the palms of my hands and the soles of my feet are spared. For now. It looks like a sunburn, but it’s SCLE. And it’s very, very photosensitive. It feels like a sunburn. It’s painful, too. Like pins and needles.
In general, it feels like having a bad sunburn and laying on a bed of nails.
The doctor told me that the ONLY treatment that will work is the immunoglobulin infusions. However, my health insurance carrier and the Federal Drug Administration have ruled that IVIG treatment for subacute cutaneous lupus is considered “experimental” and won’t authorize it. If I had kidney failure, or seizures, or pleurisy or pericarditis, maybe some other treatment would work.
The doctor also told me that plasma exchange isn’t a viable option. I’ve run the course of every pharmaceutical treatment available for lupus, with only temporary success. Did you know what word is used for patients who fail medications? They’re called nonresponders. Yep. That’s me. A nonresponder. Unless the insurance carrier will appeal their decision, I’m basically out of luck. There are no other treatment options available.
Last year I had this rash for 7 months. It was awful. Last year I had IVIG treatment and the rash went away. It went away for three months. Just three months. I have absolutely no idea how long this rash will last and what it may or may not do. They say it’s just affecting my skin. Just my skin. As if that’s not a big deal.
I’m trying to sort this out in my head. I’ve been fighting with lupus for over 16 years and never thought I’d run out of treatment options but for now, I guess I have. I should be grateful this isn’t a fatal condition … it’s just painful and disfiguring. I don’t want to go out in public. I have an insane headache. I miss my son and wish he could come home for a while, even though I know he can’t do anything about this. I’m angry and afraid. At some point I know I will pick myself up and dust myself off and get on with living my life the best way I can. What other choice do I have?
For now, I’m staying inside.