Defending My Psoriatic Arthritis Diagnosis without Psoriasis
For the first time in years, my nails are nearly free of psoriasis. There are no deep ridges and my few pits are barely noticeable. I'm relishing not having to keep my fingernails painted! And I'm already counting down the days to summer when I can show off my toenails.
But my nails clearing up came at an inconvenient time. Because while I'm so happy to have pretty fingers and toes, I'm sad to have lost my only visible symptom of psoriasis. And, of course, it came when I had to see a new rheumatologist after my old one left the hospital.
When you have PsA without skin symptoms
Seeing a new rheumatologist made me nervous since nail psoriasis was my only visible symptom of PsA. I don't have psoriasis on the skin, and I was afraid that my doctor would dismiss me or take me off of my medication without my pitted nails.
While it sounds silly since I've dealt with this disease for over half my life, it had happened before with one doubting physician. While I've seen plenty of doctors who all confirmed my PsA since, I still get nervous seeing new doctors.
But people can and do present with psoriatic arthritis without psoriasis. It's more common for children to develop arthritis symptoms either before or simultaneously as skin symptoms, but it can happen to anyone. For many people, PsA will precede psoriasis.
But not everyone, I've had my arthritis symptoms for years but never had issues with skin.
Criteria for diagnosis
A good doctor knows psoriatic disease is more than skin deep. The Classification Criteria for Psoriatic Arthritis (CASPAR) criteria is used to diagnose psoriatic arthritis and takes more than your skin into account.
To get a diagnosis of PsA without current psoriasis, you must have inflammatory arthritis and meet at least three of the following criterion:
- Having a history of psoriasis.
- Having a family history of psoriatic disease.
- Nail psoriasis.
- New bone formation near the joints.
- Being negative for rheumatoid factor.
In my case, having nail involvement was the red flag. While my mother's diagnosis of psoriatic disease and negative RF-factor were suspicious, doctors still weren't sure. Was it juvenile rheumatoid arthritis (a now-dated term for juvenile idiopathic arthritis)? It was also curious that I had enthesitis.
No one quite put it together until a doctor who treated many patients with juvenile psoriatic arthritis looked at my toenails. They were separating (onycholysis) and very thick (hyperkeratosis). It finally clicked, and I was diagnosed with JPsA!
It's my confirmed diagnosis and I stand by it
After living without a diagnosis for so long, I'm a little defensive of my diagnosis. So I've taken care to see rheumatologists and dermatologists who are very experienced in treating psoriatic disease, and I highly recommend others do the same.
When I found out I had to find a new doctor, I was so scared I wouldn't find one who was as experienced. But thankfully, with the help of the internet, I found a rheumatologist who specialized in psoriatic disease.
She looked at my files, listened to my health history carefully, and caught a few small pits in my nails I hadn't even noticed. And she confirmed- yes, Elizabeth, you can have psoriatic arthritis without psoriasis.
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?