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!

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.

The challenge: Finding good resources

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 to the pain!

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.

One solution: Find a good 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.

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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
Weselman, Kelly. "Psoriatic Arthritis." Rheumatology.org. American College of Rheumatology, Mar. 2017. Web. 27 Mar. 2017. .

Comments

View Comments (6)
  • Grace
    6 months ago

    I’ve had psoriasis for 44 yrs I’m 48 and was just diagnoised with Psoriatic Arthritis in June after years of crazy pains but, nothing like the crippling pains over these last 21 months that destroyed my health.

    My Psoriatic Arthritis Specialist said most likely stopping the Stelara prior to my thyroidectomy may have caused my increased non-stop feet,ankle and knee pains…I regret stopping it.

  • heavenzchild
    8 months ago

    I apparently had PsA for many years not realizing that some of the symptoms I was experiencing we’re not my newly diagnosed fibromyalgia. I consulted*Dr. Google” myself after watching a commercial for a biologic drug to treat PsA. And then having a name researched the lab work I needed done to start a diagnosis. Fast forward to my rheumatologist, once I was referred to in shedid additional tests to and x-rays to make a diagnosis and she was a bit on the fence between RA & PsA until she looked at my finger nails and we discussed family history of psoriasis. BINGO
    I’m still on the journey of finding the right biologic / drug combo but at least I have a name to this pain as you out it.

  • Merete
    8 months ago

    How, precisely, do I find a “good rheumatologist, familiar with etc..”. I’ve had 40 some years of tough symtomps, many misdiagnoses and even more dismissals… so what is it that I don’t know about how competent or engaged any given doctor in the phonebook is? Just recently at 73 I was finally diagnosed by a good internist the same month that I had my first skin outbreak. I still have no rheumatologist, nor a “team”.

  • Eileen B moderator
    8 months ago

    Finding a healthcare team that fits your needs can be so frustrating, Merete — especially when you’re living with chronic pain! We have an article with some tips at Finding a Healthcare Team that Works For You. (There’s a super helpful list of questions to ask potential new doctors there.)

    Also, the National Psoriasis Foundation has a free, personalized service to help you find top providers in your area with experience treating psoriatic arthritis at https://www.psoriasis.org/navigationcenter. They also have a physicians directory at https://www.psoriasis.org/health-care-providers/physicians-directory. Never forget we’re here to support you. Hugs. -Eileen, Psoriatic-Arthritis.com Team

  • Rebecca moderator
    8 months ago

    Hi Merete –
    This is such a great question. In my experiences, I’ve usually done best either doing independent research on a doctor (like googling them) or going by word of mouth. I will visit the practice’s website and read the biographies of the doctors to see if any specialize in my particular condition. When I call I’ll also tell the receptionist I’m looking for a doctor who has experience or specializes in (psoriatic arthritis). You may also want to ask your referring doctor for recommendations – that’s usually a good starting point. I’ve also had good luck asking in my local neighborhood facebook groups.
    And, sometimes, I get referred to a doctor that just isn’t a good fit. Or, the office staff is too grueling to work with. Then, I just start over again. I hope this helps – be sure to let us know how you make out.

  • ginaw
    8 months ago

    Thank you so much for this post! I can definitely relate to this and thinking seriously about changing doctors.

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