By Jose Scher, MD, as told to Hope Cristol
Psoriatic arthritis is a condition that brings many challenges, both for patients and for doctors. One of the most important ones is that you need to have patience with this disease. There’s not a simple path to either your search for answers or your search for relief.
The journey to a psoriatic arthritis diagnosis is not a linear one. It can take years for people to get an accurate diagnosis. That can be frustrating, of course, but it’s also common. That’s because psoriatic arthritis is such a complex and varied disease.
Different Health Issues, Same Diagnosis
Most people with psoriatic arthritis have skin inflammation years before they develop any arthritis pain.
In that way, the health journey of most patients starts the same way, at least clinically. But as the disease progresses to inflammation in the joints, tendons, or bones (called musculoskeletal inflammation), things get more complicated.
Sometimes, you get swelling and pain in two joints, as often happens with arthritis. But in other cases, psoriatic “arthritis” is kind of a misleading name.
There’s a type in which you have inflammation of the tendons, called enthesitis. People go to their doctors with what they think is muscle pain and get treated for that. They can go for years without an accurate diagnosis.
Then there’s the spine form, which we call axial psoriatic arthritis. This essentially causes back pain. It happens mostly to younger people. So it often goes underdiagnosed or undiagnosed, especially in people who have played sports.
One of the reasons many people don’t quickly get answers about what’s causing their pain is that there’s no biomarker for psoriatic arthritis. A biomarker is a characteristic of your body that can be measured in some way. With gout, for example, if you take a sample of fluid from a joint you can see uric acid crystals, which are specific to gout.
Imaging studies, such as MRIs, X-rays, and even ultrasounds, can be a big help in diagnosing psoriatic arthritis. But they don’t always lead to a definite conclusion.
When I give a patient a diagnosis of psoriatic arthritis, I usually get asked two things. First: “Is there anything I can do to cure it?” After that, “How do we treat it?”
The concerns come after I explain that there is no cure, but that medications can be very effective. Some patients have looked up the medications online and are worried about potential side effects. I sometimes have to tell them, “Don’t confuse your Google search with my medical diploma.”
Instead of making snap decisions based on something you’ve read online, have a wide-ranging conversation with your doctor about the risks and benefits of treatment. Again, this is where patience can be valuable for both parties.
I try to listen to all the concerns and conceptions (and misconceptions) my patients have about treatment, so I can put them in perspective.
Powerful drugs can have powerful side effects. But they have so much to offer in terms of benefits. Usually by the end of our first treatment conversations, patients are less fearful and more ready to take the next steps to get well.
What About ‘Natural Remedies’?
I hear all the time from patients that they really want to manage their disease with natural remedies. This might include certain foods or supplements including probiotics, which are live microorganisms linked to gut health.
It’s an attractive and challenging idea. Researchers are doing great work in animal studies on the role that the gut microbiome plays in health and disease. But that’s early research. And much of it is in areas like cancer and inflammatory bowel disease.
There is one “natural remedy” that we know without doubt can improve psoriatic disease: weight loss. It helps people who are even slightly overweight. It helps on a mechanical level by taking pressure off your joints. It also reduces the activity of the disease, since fat cells contribute to inflammation in your body.
But it’s not as appealing as taking a supplement or eating a certain food. It takes time — and patience — to manage this disease.