Psoriatic Arthritis Without Psoriasis
A common phrase in medicine is “when you hear hooves, you don’t think of zebras.” But sometimes those hooves do belong to zebras. And sometimes a patient has all of the symptoms of psoriatic arthritis without having psoriasis!
Can you have psoriatic arthritis without psoriasis?
Though it’s rare, it’s completely possible to have psoriatic arthritis without having skin lesions. According to the American College of Rheumatology, arthritis precedes psoriasis in rare cases, and it tends to appear alongside family history of psoriasis and/or nail psoriasis.
Unfortunately, these cases can be extremely difficult to diagnose. And once you have a diagnosis, the lack of information can be extremely frustrating.
Receiving a diagnosis
It took many years and a few doctors to finally conclude that I had psoriatic arthritis without psoriasis at age 13. Many doctors observed my distinct symptoms like enthesitis, but couldn’t make the connection.
A pediatric rheumatologist who specialized in rare rheumatic diseases was able to give me a proper diagnosis after noting my symptoms unique to psoriatic disease, psoriatic nails, and family history of psoriasis. It was an incredible relief to have a name for the pain!
Challenges finding resources and information
The relief was short-lived, however, as I quickly became disheartened because there is so little information about these cases. Not many rheumatologists have experience with cases of psoriatic arthritis without psoriasis. Consulting Dr. Google was practically useless, yet I had so many questions!
It was unnerving to know so little- especially not knowing the average length of time between developing arthritis and psoriasis. In a lot of ways, I almost felt excluded from resources about psoriatic arthritis because they had little to no information about having psoriatic arthritis without psoriasis.
The importance of seeing a rheumatologist
In the eight years since I was diagnosed, I’ve learned a lot. While I never found a study on the length of time between developing arthritis and psoriasis, it has been almost twenty years since I developed arthritis and I don’t have psoriasis… yet (knock on wood).
I’ve learned to live knowing I could develop psoriasis, but that I shouldn’t worry too much. Sometimes doctors still question if my diagnosis is correct, occasionally checking me for lupus, but always conclude (yet again) it’s psoriatic arthritis. Though it’s maddening to have people constantly question my diagnosis, I realize it’s only because it’s rare in cases like mine.
A diagnosis isn't impossible!
For anyone who has psoriatic arthritis without psoriasis, I highly recommend finding a good rheumatologist- someone who is familiar with psoriatic disease or uncommon rheumatic conditions. It can make the world of difference as they may be good at recognizing the distinct symptoms you have, and will know how to treat them more effectively.
I also recommend making it very clear to others, especially doctors, that you do have psoriatic arthritis- don’t let them label you as having rheumatoid. They’re two different diseases, but unfortunately I’ve encountered many people and a few physicians who are quick to label it as RA.
And finally, feel confident that your diagnosis is correct. Just because something is uncommon doesn’t mean it’s impossible! Be your own advocate and inform the world! So go and be confident; you’re a rarity, my friend! Don’t shy away from people who are insistent it is impossible, and educate others as much as you can. And above all, you’re not alone!
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?