Resources When You’ve Run Out of Ideas for Your Psoriatic Disease

Samantha Holmgren has made a career out of helping people battle chronic joint pain and fatigue. The registered dietitian from Canada knows firsthand how powerful nutrition and mindfulness can be to help people regain control over their lives when living with a disease – she also lives with psoriasis and psoriatic arthritis (PsA). These are known as psoriatic disease.

Holmgren, 33, has had psoriasis since she was a baby. She was diagnosed with psoriatic arthritis (PsA) at 24.

The condition is an autoimmune disease which causes itchy patches on skin and nail problems. It affects more than 8 million people in the U.S.

It’s harder to tell how many people have PsA worldwide. One study on less than 1,000 people from North America and Europe estimates that about 30% of people with psoriasis have PsA. It can be more common in certain areas of the world, compared to others. About 36% of those in the U.S. with psoriasis have PsA.

PsA isn’t common in the general population. But if you have psoriasis, you’re more likely to get PsA, too. The inflammatory disease causes joint pain, swelling, and stiffness. As a result, PsA may limit how much you can move.

One of the biggest challenges for Leena Chitnis, 44, of California, who has psoriatic disease, was simply finding out that she had it.

“It took forever to get a diagnosis. … I wish doctors and derms [dermatologists] would have figured it out sooner,” Chitnis says. She had psoriasis since 2013 but wasn’t diagnosed until 2017. Research shows that it’s common not to be diagnosed until years after you actually have the disease. This is important because psoriatic disease can get worse over time.

Skin color can play a part in delayed diagnosis or misdiagnosis. There are also disparities in treatment. For instance, White people are more likely to get treated with a biologic agent than Black people.

Another challenge is being overwhelmed by resources and research.

“There are so many strategies to help manage life with these conditions, it’s hard to know where to start,” Holmgren says.

“Autoimmune disease is often tied to a genetic hand-me-down from one or both of our parents,” Chitnis says. “But as we’ve learned, DNA is not destiny. You can literally turn those bad genes on or off with your lifestyle.”

Living Well With Psoriatic Disease

You may want to try a new strategy to improve your quality of life. Research varies on which lifestyle interventions can help, whether you have PsA, psoriasis, or both. These are a few areas you may want to focus on:

Weight management. The higher your body mass index (BMI), the higher the chance that you’ll get psoriatic disease. Some research shows that higher weight may raise your risk for psoriasis, specifically. Losing weight can lower psoriasis severity scores, according to some studies. Other evidence shows it may lower psoriasis on your skin and help you respond better to medicines.

Diet. Some evidence shows that what you eat can help with how severe your psoriasis is. But researchers aren’t sure if the weight loss or the diet itself improved symptoms. Many say they want to see more studies on people who are not clinically overweight or obese to determine if people below those weight ranges would benefit from following certain diets.

Chitnis says the more raw produce she eats, the better she feels.

“One day of eating raw, and you’ll feel the results immediately, but for long-term relief, eating as much raw as possible has to become a way of life,” she says.

Supplements. Scientists have studied fish oil and eicosapentaenoic acid (EPA), vitamin D, and curcuma most often for psoriatic disease. Some of the study sizes are small and had short follow-up periods. The three biggest studies didn’t show significant effects from taking vitamin D or fish oil. Others that showed some evidence that they’re effective for psoriasis include herbals indigo naturalis (qing-dai in Chinese medicine) and curcumin, a compound in turmeric.

Movement. Add exercise to your routine to help with PsA – not moving may make it worse. A review of research shows that when done regularly, exercise can help. It outweighs the risk of inflammation where tendons and ligaments meet bones, or enthesitis. You can modify stretches to make up for any mobility challenges you have.

Smoking and drinking. This can up your chances of getting PsA and make the disease more severe. It may limit how well your medications work, too. Some evidence suggests drinking alcohol worsens psoriasis and makes you more likely to get PsA if you have psoriasis.

Complementary Therapies for PsA and Psoriasis

Complementary treatments, from yoga to mindfulness, may help you find relief, too. A National Psoriasis Foundation survey found that 41% of people use complementary therapies –they’re more common in those with severe psoriasis than in those who say theirs isn’t severe. Out of a group of people with PsA, one survey found 53% used these treatments in the past year.

Chitnis swears by freezing-cold showers to ease inflammation. She alternates the temperature with hot water to relax her muscles. She also gets regular massages and uses magnesium oil to relax her muscles and help her sleep.

New and Upcoming Psoriatic Disease Treatments

Drug development continues for psoriatic disease. In recent years, biologics have been approved to treat it. Deucravacitinib is a newer oral medication that the FDA approved for psoriasis. The monoclonal antibody bimekizumab could soon be approved in the U.S., too.

In addition to medications, researchers are trying to create a diagnostic test for PsA. They hope people can get diagnosed sooner – and treated, too – because earlier treatment can delay joint damage.

It’s equally important to be aware of secondary issues that you may face. Psoriasis is linked to eye problems, weight gain, gum issues, and a higher risk for Crohn’s disease, just to name a few. If you have PsA, you’re more likely to have type 2 diabetes, obesity, high blood pressure, or high cholesterol.

Where to Turn for Psoriasis and PsA Resources

If you feel like you’ve exhausted your resources, these groups may be a good way to find new health care professionals, therapies, and clinical trials, and to connect with others who also have your condition.

The National Psoriasis Foundation is a good place to start. The organization offers patient navigators to connect you with resources, as well as events (including webinars) and a peer support service. The Arthritis Foundation holds local events and support groups around the country, offers details on clinical trials, and has a library of articles on healthy living. It also has a helpline at 800-283-7800.

Sign up for newsletters and alerts from trusted sources, says David Chandler, the CEO of the Psoriasis and Psoriatic Arthritis Alliance, which is based in the U.K.

“Such groups are often involved in early developments of new therapies so they can keep people up to date with what’s new and offer people information to make informed choices,” he says.

It can be challenging to navigate all of the information and integrate it into your life. Plus, your disease can change as time goes on.

What’s led Chitnis well is to stay true to herself. It may not be possible to remove all stressors from your life. Life is filled with good and bad stresses, as well as turbulent events, she says. But, she reminds everyone, “live your truth.”

Photo Credit: Moment / Getty Images

SOURCES:

Samantha Holmgren, registered dietitian, Canada.

Leena Chitnis, California.

David Chandler, CEO, Psoriasis and Psoriatic Arthritis Alliance

CDC: “Psoriasis.”

National Psoriasis Foundation: “Psoriasis Statistics,” “Understanding Psoriatic Disease,” “Psoriasis and Skin of Color,” “Little Stretches, Big Differences,” “Smoking and Psoriasis,” “FDA Approves Sotyktu for Psoriasis,” “Psoriatic Arthritis Diagnostic Test Grant.”

Journal of the American Academy of Dermatology: “Prevalence of rheumatologist-diagnosed psoriatic arthritis in patients with psoriasis in European/North American dermatology clinics,” “Use of complementary and alternative medicine by patients with psoriasis.”

Arthritis Foundation: “How Common is Psoriatic Arthritis in People with Psoriasis?”

Rheumatic Disease Clinics of North America: “The Epidemiology Psoriatic Arthritis.”

Johns Hopkins Medicine: “Psoriatic Arthritis,” “Turmeric Benefits.”

The Psoriasis and Psoriatic Arthritis Alliance: “Keeping Active.”

British Journal of General Practice: “Mapping opportunities for the earlier diagnosis of psoriasis in primary care settings in the UK: results from two matched case-control studies.”

The Journal of Rheumatology: “Diagnostic Delay in Psoriatic Arthritis: A Population-based Study.”

Mayo Clinic: “Psoriatic arthritis.”

Cleveland Clinic: “How Psoriasis Affects Black People and People of Color.”

Journal of Investigative Dermatology: “Racial Differences in Perceptions of Psoriasis Therapies: Implications for Racial Disparities in Psoriasis Treatment.”

Rheumatology: “Association between psoriatic disease and lifestyle factors and comorbidities: cross-sectional analysis and Mendelian randomization.”

PLOS Medicine: “Evidence of a causal relationship between body mass index and psoriasis: A mendelian randomization study.”

Cureus: “Effects of Weight Loss on Psoriasis: A Review of Clinical Trials.”

American Academy of Dermatology Association: “What Should I Eat If I Have Psoriasis?” “Can Psoriasis Affect More Than My Skin?”

Cochrane Database of Systematic Reviews: “Lifestyle changes for treating psoriasis.”

Psoriasis: Targets and Therapy: “The Effect of Lifestyle Changes on Disease Severity and Quality of Life in Patients with Plaque Psoriasis: A Narrative Review.”

Chinese Medicine: “From natural dye to herbal medicine: a systematic review of chemical constituents, pharmacological effects and clinical applications of indigo naturalis.”

JAMA Dermatology: “Complementary and Alternative Medicine Therapies for Psoriasis.”

Nature Reviews Rheumatology: “Enthesitis: from pathophysiology to treatment.”

American Journal of Clinical Dermatology: “Alcohol and Psoriasis for the Dermatologist: Know, Screen, Intervene.”

American College of Rheumatology: “Modifiable Risk Factors and the Development of Psoriatic Arthritis in People with Psoriasis,” “Use of Complementary and Alternative Medicine (CAM) in a Psoriatic Arthritis Cohort.”

UCB: “UCB Announces FDA Acceptance of BLA Resubmission for Bimekizumab.”

Tiwari, V., et. al. Psoriatic Arthritis, StatPearls Publishing, 2023.

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