Now for Something Different: GVHD of the Fingernail
Since the days when I started out as a cub reporter longer ago than I care to admit, the search for information has grown both easier and harder. Easier, of course, because everything is at your fingertips, and harder in the sense that you can find too much information and go down rabbit holes. One thing can lead to another, and before you know it, you can forget where you started.
Information at my fingertips
Well, I know where I started in my search for information on my latest complication. That’s because unlike in almost every other search, I haven’t gotten very far. Speaking of fingertips, that’s where my problem is, or, more precisely, my fingernails. Twelve years after my fourth stem cell transplant, I seem to have developed GVHD of the fingernails. I guess I just like to do things differently.
Changes in the nails a sign of GVHD
I looked and I looked and I found this: “Cutaneous GVHD is characterized by the presence of one or more of the following features: skin and mucosal involvement, nail changes, scarring or nonscarring alopecia, and impairment of sweating. Nail change is one of the most important manifestations of cutaneous GVHD, but it has been rarely mentioned in literature.”1
GVHD can do strange things
I thought that it was odd when, seven years after my transplant, I developed GVHD of the skin. Apparently though it wasn’t especially odd; chronic GVHD can do strange things at any time. I learned that I could get used to something that at first made me squirm: extracorporeal photopheresis for GVHD of the skin, or ECP.
When I started the procedure, I went twice a week and gradually weaned to every three weeks. I was supposed to cut back even more slowly but abruptly stopped when the pandemic started.
Much to my surprise, though, my skin stayed soft and did not revert to the hard and lumpy and bumpy skin that had made me realize something was wrong.
Surprise! A new symptom
Then, about a year ago, something strange started happening to my nails. In layman’s terms, about half of them turned GROSS.
They developed ridges and cracks, and one even turned white, a sign, I later learned, that the nail had died. A trip to a dermatologist who specializes in diseases of the nail led to a fingernail biopsy that was quite unpleasant and took a long time to heal.
The result: GVHD of the fingernail.
I thought I would have to start the whole ECP procedure again. Though I had gotten used to it, and had come to love the nurses who did it, I was not happy about starting up again. It would mean more trips to Boston, 90 miles from my home, to spend hours at a time, with a big needle in my arm, hooked up to a machine that filtered my blood and irradiated it.
It turns out, though, that GVHD of the nail is a creature of its own.
How long did it take to be properly diagnosed?