Lessons Learned From Patients With Psoriatic Disease
If you’re among the millions of people living with psoriasis and psoriatic arthritis (PsA), you’re no stranger to the considerable toll the autoimmune condition can take on your quality of life. That’s because psoriatic disease isn’t “just” a skin condition or joint pain. Besides physical symptoms, you might face various roadblocks, mental challenges, and structural barriers as you try to access proper, affordable, and consistent care.
Why is that? For one, there’s no straightforward cure for psoriatic disease. While there’s a growing list of advanced treatment options, finding one that’s best suited for you might take some trial and error. Doctors often have these frustrations, too.
Read on as dermatologists share some of the common frustrations people with psoriatic disease face, offer insight into why it’s tricky to manage the condition in the long run, and share tips on how to improve the doctor-patient relationship.
Living With Psoriasis and PsA: Common Frustrations
The inflammation that stems from psoriatic disease causes visible symptoms like red, itchy, scaly, painful skin and achy joints.
To keep the symptoms and flare-ups under control, you’ll need to stay on top of your treatment and figure out healthy coping skills to keep stress levels to a minimum. But this can often lead to feelings of frustration.
Managing Symptoms
For most types of psoriasis, the first line of treatment is usually either ointments that you put on your skin (called topicals), phototherapy, or prescription medications that you take either as a pill or an injection.
While this might sound easy enough, Luis Garza, MD, a professor of dermatology at the Johns Hopkins University School of Medicine, says taking these therapies as prescribed on a regular basis can become a burden for many.
“If there are a lot of topicals, sometimes they’re difficult to apply, especially to large areas of the body,” he says.
That’s because topicals like ointments, sprays, creams, and oils are often sticky or greasy in texture with a strong odor. This might make it messy and time-consuming to apply regularly. And some ointments tend to stain your clothing and are slow to absorb into your skin, and if you apply them to your scalp, they might change your hair color.
If you’re using light therapy, you’ll need to carve out time to expose your skin to ultraviolet rays several times a week. Usually, this is done in a doctor’s office or at home. This, Garza says, can be demanding. And if you’re using injectable drugs, learning how to poke yourself with a needle regularly can be a scary and overwhelming process.
Treatment Dissatisfaction
Adam Friedman, MD, a professor and chair of dermatology at the George Washington University School of Medicine and Health Sciences, says one of the most common issues he comes across is treatment dissatisfaction.
“Patients will come in and say, ‘I’ve used these creams, and they didn’t work,’ ” he says. But he says that’s not always the full picture or a “good measure of treatment failure or success.”
Because sometimes, you might see some improvement, stop taking the medication, and the psoriasis might flare up again. Some medications don’t perform well if you stop taking them and restart them. And depending on the type of topical or medication you’re on, Friedman says, it can take anywhere from a couple of weeks to a few months to notice improvements.
Friedman believes lack of education on psoriatic disease and how treatment works might be the root of frustration for many people.
“Knowing how to use your treatment is of the utmost importance,” he says. If you don’t notice any changes, it might be time to switch up the treatment plan.
To avoid treatment dissatisfaction, James Ralston, MD, a dermatologist from McKinney, TX, points out that doctors should discuss a “strategy for maintenance treatment even when the skin is clear.”
Social Isolation
Ralston says symptoms can be isolating and cause you to feel self-conscious. This can have a trickle-down effect on your social life.
“Not being able to wear shorts or go swimming without people staring at them or people thinking they have something that is contagious can have a significant impact on a patient’s mental health,” he says.
Navigating Health Insurance
“One challenge physicians face is getting the best treatment for a patient covered by their insurance and at an affordable price for the patient,” Ralston says.
Some medications, like disease-modifying antirheumatic drugs (DMARDs), also known as biologics, might need health insurance company approval before your doctor or pharmacy can fill the prescription.
This can be tricky and time-consuming. In fact, one study found that if you need prior authorization for biologics, whether you use private insurance or government plans such as Medicare or Medicaid, you’re more likely to face delays in getting timely care.
Private insurance was tied with the longest delay. People on average had to wait up to 42 days for their medications to be approved before the doctor could prescribe them.
In some cases, doctors “are able to buffer them [care delays] with free drug samples,” Friedman says. But that might not always be the case, as some hospitals or clinics ban or restrict doctors from passing free samples to ensure drug safety.
“Often nowadays, the best treatment is the one you can actually get for the patient. That’s because there are so many hurdles to getting patients on therapies because of their cost,” says Friedman.
If you don’t have insurance and you’re planning to pay out of pocket, some psoriatic disease treatments could turn out to be quite expensive. To keep costs low, you could contact the drugmaker or work with your doctor for medication discounts.
Psoriatic Disease and Social Determinants of Health
Research shows that where you’re born, your age, your race, where you live, your home or work environment, and your socioeconomic class determine the quality of your health. Experts call these things social determinants of health. This can greatly influence how you manage your psoriatic disease symptoms.
For example, to get a diagnosis, you’ll need to visit a dermatologist, preferably in person, to examine your skin or achy joints before they can prescribe a treatment plan.
But if you live in a rural area, are low-income, lack transport or child care for follow-up visits, or don’t have the means to pay for the treatment, you’re less likely to stay on top of your therapies and manage your symptoms properly in the long run.
In fact, one study found that those who have a low income and lack proper access to specialists like dermatologists are more likely to have severe psoriasis during their first trip to a doctor’s office.
“I think that I encourage physicians to always be curious as to why someone doesn’t show up at the last minute,” Friedman says. “Especially because we know and acknowledge that there are structural barriers and issues when it comes to medication and good health care.”
How Can a Patient-Centered Approach Improve Care?
When doctors work closely with you and listen to you, to come up with a treatment plan that works best for your situation and needs and keeps your health goals in mind, this is known as patient-centered care.
With psoriatic disease, since symptoms vary from person to person, Friedman states that a personalized care plan is often the most useful approach.
In such a setting, doctors also focus on your mental, emotional, spiritual, and financial well-being to help you get close to your health goals. In the case of psoriatic disease, it’s important to find ways to manage stress, a common trigger for flare-ups, to keep the symptoms at bay.
“Having time with family and friends, participating in patient groups, focus groups, or support groups, through social media, and in person. Those are some ways of helping with stress,” says Garza.
What Can Doctors Do to Improve Psoriatic Disease Management?
Research shows an honest, open line of communication between doctors and patients can go a long way in improving the overall quality of care.
To do this, it’s best if doctors try to learn more about the patient’s history and living circumstances, pay close attention to emotional cues, and acknowledge their concerns beyond just the physical symptoms.
“Sometimes lifestyle changes, such as diet or smoking cessation [quitting], make a big difference,” Ralston says.
“It’s [psoriatic disease] really disabling and ostracizing. There’s an added burden of the emotional, and psychiatric impact of the disease just from having the disease. So, I think it is a twofold hit. Which is why we see a higher rate of suicide ideation, depression, substance abuse, and uncontrolled disease,” says Friedman.
To better manage this, he notes it’s important to team up with a primary care doctor to co-manage the psoriatic disease as well as address other conditions.
And if your emotional well-being is off, tell your doctor about it. They’ll refer you to a licensed mental health professional such as a psychiatrist, psychologist, or a counselor to help you get better.
“Having psoriasis is really stressful. It really is. And you shouldn’t have to handle that stress on your own,” Friedman says.
Lastly, find and build a good working relationship with a doctor who advocates for the best health care for you.
“You need to go to an office that has the wherewithal and the resources to be able to fight the good fight, which often is a fight with insurance,” Friedman says. “This is a chronic disease, we cannot cure it. We can, however, control it.”
