How to Advocate for Yourself When You Have Psoriatic Arthritis

From everydayhealth.com

Inflamed joints, stiff hands, lower back pain, and fatigue — psoriatic arthritis (PsA) can be difficult to explain when many of your symptoms may be invisible. You might look fine while you're dealing with a flare that’s making everyday tasks like typing, cooking, or keeping up at work harder than they look from the outside.

That gap between how you look and how you feel can make it harder to get the support you need from your doctor, family and friends, and your employer. This is where self-advocacy comes in. It means communicating clearly about your symptoms, speaking up when you need changes to your treatment plan or daily responsibilities, and helping loved ones understand how your condition is affecting your life.

Medical Appointments: Plan Ahead

One of the most important places to advocate for yourself is at your doctor’s office.

Document Your Medical History

Appointments can feel short, so it helps to arrive organized and prepared to ask questions, says Joy Selak, PhD, the co-author ofYou Don’t Look Sick! Living Well With Invisible Chronic Illness, which she wrote alongside her rheumatologist. The book chronicles Dr. Selak’s decades-long journey with two invisible illnesses.

Selak brings a one-page document to her medical appointments, listing her diagnoses, current prescriptions, history of surgeries and medical interventions, and a notes section with questions or topics she wants to cover that day.

“Everything you can do to not take up appointments with data collection, but get right to what the concerns are, can lead to a more meaningful conversation,” she says.

Document which medications you’ve tried, and why they didn’t work, says Arthur Mandelin, MD, PhD, a Chicago-based rheumatologist and an associate professor at the Northwestern University Feinberg School of Medicine. “Without this information, insurance delays in getting access to the next or newest drug can be very lengthy,” Dr. Mandelin says.

Track Your Symptoms Between Appointments

Get specific when tracking your symptoms between appointments, says Alireza Meysami, MD, the head of rheumatology at Henry Ford Health in Detroit, where he specializes in diagnosing and treating inflammatory arthritis, including psoriatic arthritis.

“Patients are experts on how the disease affects their daily lives. The most helpful information is not simply where it hurts, but how it changes what they can and cannot do,” Dr. Meysami says.

Keep track of:

• Joint pain, swelling or stiffness, and how long morning stiffness lasts
• Fatigue and how it affects daily activities
• Skin or nail changes
• Flare-ups, including what may have triggered them and how long they lasted
• Amount of prednisone being used, if any

Instead of saying “My pain is worse,” provide examples, such as, “I can’t type for more than 20 minutes” or “I had to stop walking my dog.” “These functional examples help us understand the true impact of the disease and make better treatment decisions,” Meysami says.

This is a crucial step if your doctor needs to fill out paperwork for workplace accommodations, Mandelin says.

Some people rate their pain and functional impairment on a scale of 1 to 10 — with 10 being worst — to help their doctors understand disease severity, Mandelin says.

Take Photos of Symptoms

When possible, take photos of swollen joints, psoriasis plaques, nail changes, or dactylitis (“sausage digits”), Meysami says. He says these details are “extremely valuable” because symptoms can improve before a doctor’s visit.

Push for Treatment Adjustments if Needed

If you have persistent joint pain, worsening psoriasis, or difficulty completing everyday tasks despite treatment, tell your doctor, Meysami says. “Patients should never assume they simply have to ‘live with it,’” he says.

Your rheumatologist can suggest another treatment option, including biologic therapies and targeted oral medications, he says.

Another important sign is needing frequent courses of steroids or relying on pain medications to get through the day.

At Home: Establish a Way to Ask for Help

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At home, self-advocacy often starts before you’re in the middle of a flare. Having clear, proactive conversations with family members can make it easier to ask for help when symptoms are flaring.

Have the Conversation Before You Need Help

Instead of waiting until you’re already overwhelmed, try explaining what PsA is like when you’re feeling well, Selak says. Sit your family down and explain what may happen during a flare up. “You need to get out in front of it on a good day. Then you’re both being realistic about what you can and can’t do and when you can and can’t do it,” she says.

That way, loved ones aren’t trying to understand your needs for the first time when you’re already depleted.

Break the ‘I’m Fine’ Habit

Saying “I’m fine” can feel easier than explaining pain or fatigue, especially if you don’t want to seem like you are complaining. But masking symptoms can leave family members unaware of what you’re carrying — and may lead to burnout, resentment, or less support than you actually need, Selak says.

“All of us who have had a chronic illness have done this, where you try to buck it up. There’s no upside to it,” she says. “Don’t pretend you’re okay when you’re not.”

Explain the Impact, Not Just the Feeling

When you’re living with an invisible illness, daily challenges aren’t as obvious as a broken bone or visible injury. But with PsA, common limitations include carrying groceries, typing, cooking, opening jars, climbing stairs, getting dressed, driving long distances, and even playing with the kids, Meysami says.

Instead of saying, “I'm flaring,” he suggests examples, such as, “My hands are too stiff to button my shirt,” “I’m exhausted after grocery shopping,” or “Walking upstairs feels like climbing a mountain today.”

“Describing symptoms in practical, real-world terms is one of the best approaches,” he says. It could be your family’s cue to understand it’s time to pitch in.

At Work: Formalize Your Accommodations

If managing work with PsA symptoms is becoming difficult, it may be time to advocate for yourself and ask for accommodations.

Learn Your Rights

Familiarize yourself with the Americans with Disabilities Act (ADA), your company’s HR policies around time off for appointments and sick leave, and resources available to you, Selak says.

Under the ADA, people whose PsA qualifies as a disability may be protected from discrimination, and you may be able to request reasonable accommodations. And if you can’t work due to your condition, you may be eligible to apply for disability benefits.

Ask for Specific Support

Before talking to HR or your manager, make a short list of what would help you do your job, Selak says. The Job Accommodation Network lists arthritis-related options such as voice-to-text software, typing aids, working from home, or scheduled breaks to stretch. Explain the limitation and a practical fix, Meysami says. “One of the biggest challenges with psoriatic arthritis is that much of the disease is invisible. Patients sometimes worry they'll be viewed as complaining or exaggerating because others cannot see what they're experiencing,” Meysami says.

With Friends: Educate Your Inner Circle

Friendships can become complicated when PsA affects your energy, mobility, or ability to keep plans. The key is to be straightforward, says Elizabeth Medeiros, who was diagnosed with juvenile psoriatic arthritis in 2010 when she was 14 years old, and has since blogged about life with the chronic condition.

Medeiros says her approach depends on the relationship. Long-time friends may already understand her limits and recognize when she needs to slow down, but with newer friends, she’s learned to be upfront about flares, needing to cancel, or adjusting plans.

“Being direct helps, like, ‘I’d really love to come to the museum with you, but the only way I can handle it is if I rent a wheelchair for the day. Is that something you’d be okay with?’” she says.

It also helps to offer another way to connect if you need to cancel, such as inviting a friend over for pizza and a movie or scheduling a FaceTime call instead, she says.

Get Support Beyond Your Rheumatologist

Advocating for your health also means asking for additional support, such as physical therapy or occupational therapy, Mandelin says.

“I refer any patient who asks, whenever they feel ready to ask, including the very first visit if that's what the patient feels they need,” he says.

An occupational therapist can recommend adaptive equipment, provide splints or braces, or teach joint protection techniques, while a physical therapist can help with mobility, flexibility, muscle strength and overall physical function, Meysami says. “Depending on the patient's needs, we may also involve dermatologists, pain specialists, psychologists, nutritionists, or social workers,” he says.

He says patients should feel comfortable asking questions like:

• Would occupational therapy help me?
• Would a hand splint or brace make daily activities easier?
• Could physical therapy improve my mobility?
• Are there support groups or mental health resources available?

Emotional support matters, too. Medeiros says therapy has been especially helpful during times when family and friends could not support her as much, or when pain and fatigue during flares made it harder to work through her emotions.

“Managing a chronic disease isn't about doing everything alone, it's about using the right tools and support to continue living a full and meaningful life,” Meysami says.

The Takeaway

• To advocate for yourself when you have psoriatic arthritis, start with clear, organized communication — bring your medical history, symptom changes, photos, and top questions to appointments so your doctor can understand how PsA is affecting your daily life.
• At home, work, and with friends, explain adjustments you may need and the practical impact of PsA, such as trouble typing, cooking, climbing stairs, or keeping plans, instead of minimizing your symptoms.
• Learn about resources that can improve your quality of life, such as referrals to OT, PT, psychotherapy, and support groups, so you don’t have to manage PsA alone.

https://www.everydayhealth.com/psoriatic-arthritis/how-to-advocate-for-yourself-with-psoriatic-arthritis/ 

'They Might Amputate My Legs': 29-Year-Old Fights Psoriatic Arthritis - Warning Signs To Watch For

From ndtv.com

Psoriatic arthritis (PsA) is a chronic inflammatory condition that affects the joints and can develop in people with psoriasis. It is an autoimmune disease, which means the immune system mistakenly attacks healthy tissues, causing inflammation.

Phoebe Phillips, a 29-year-old, says that she is facing the possibility of a double leg amputation after years of severe inflammatory arthritis damaged both her knees. The woman was diagnosed with psoriatic seronegative inflammatory oligoarthritis in March 2019, after her right knee suddenly became severely swollen and painful in late 2018. Over the years, she says she tried several medicines, including methotrexate, sulfasalazine, JAK inhibitors and biologic drugs, but her disease continued to progress. By April 2026, an X-ray showed that she had no cartilage remaining in her knees, which has made walking incredibly difficult.

"I've missed out on my entire adulthood so far," said Phoebe, according to a report in Mirror. "It's really the small things that are so much more important to me. Just to be able to go up and down a couple of stairs like a normal person.. Standing in the shower and not having to sit down - all the small stuff.

"I can't even sleep in a normal bed, I have a rail next to the toilet, and all those kinds of things that I just shouldn't have to be dealing with, if I'd have been taken more seriously sooner or listened to."

Phoebe says she needed to repeatedly advocate for herself and feels her concerns were not taken seriously early enough. She now has severely restricted movement, permanently bent legs and difficulty carrying out everyday activities such as climbing stairs, sleeping comfortably and standing in the shower. Doctors have advised that double knee replacement may be necessary and the procedure might have to be repeated every 10 years. She says she has also been warned that repeated replacement surgeries and bone loss could eventually make above-knee amputation necessary. However, Phoebe said that it is a risk she is willing to take.

What Is Psoriatic Arthritis?

Psoriatic arthritis (PsA) is a chronic inflammatory condition that affects the joints and can develop in people with psoriasis. It is an autoimmune disease, which means the immune system mistakenly attacks healthy tissues, causing inflammation.

Psoriatic arthritis may lead to cartilage loss, bone damage, deformity, stiffness, and other problems   Unsplash

Although psoriasis often appears as red, scaly skin patches, PsA can affect the joints even when skin symptoms are mild or absent. It may affect the knees, fingers, toes, ankles, elbows, spine and the joints connecting the spine to the pelvis. Unlike ordinary wear-and-tear arthritis, PsA can cause inflammation that progressively damages cartilage, bone and other structures around the joints if it is not adequately controlled.

Types Of Psoriatic Arthritis

Psoriatic arthritis can appear in different patterns. The main types include:

• Asymmetric oligoarthritis: Affects a small number of joints, often on one side of the body
• Symmetric polyarthritis: Affects several joints on both sides of the body and can resemble rheumatoid arthritis
• Distal arthritis: Mainly affects the joints closest to the fingertips and toenails
• Spondylitis: Causes inflammation and stiffness in the spine and sacroiliac joints
• Arthritis mutilans: A rare but severe form that can cause major destruction of the joints and bones in the hands and feet

Warning Signs To Watch For

Symptoms can vary considerably, but common warning signs include:

• Persistent joint pain, swelling or stiffness
• Stiffness that is worse in the morning or after periods of inactivity
• Swollen fingers or toes, sometimes described as "sausage digits"
• Pain around the heels or where tendons attach to bones
• Lower back or buttock pain linked to inflammation
• Nail changes such as pitting, ridges or separation from the nail bed
• Psoriasis or a history of psoriasis
• Reduced movement or difficulty using an affected joint
• Fatigue

What Causes Psoriatic Arthritis?

There is no single known cause. PsA develops through a combination of genetic, immune-system and environmental factors.

Genes can increase susceptibility, which is why having a close relative with psoriasis or PsA can raise the risk. The immune system then becomes abnormally activated and triggers inflammation in the joints, tendons and other tissues.

Certain environmental factors may also contribute, including infections, physical trauma and other immune triggers. However, having psoriasis does not mean a person will definitely develop PsA.

Who Is At Higher Risk?

People with psoriasis are at increased risk of developing PsA, particularly those with extensive skin disease or certain nail changes. A family history of psoriasis or PsA can also increase susceptibility.

PsA can develop at any age, although it commonly begins in adulthood. Other factors, including obesity, smoking and some environmental triggers, may also be associated with a higher risk. It is important to note that the condition can also occur in people who have not previously been diagnosed with psoriasis.

What Happens If Psoriatic Arthritis Is Not Controlled?

Persistent inflammation can gradually damage joints. Over time, this may lead to cartilage loss, bone damage, deformity, stiffness and significant loss of mobility.

People with severe disease may struggle with walking, working, exercising or performing routine activities. Chronic pain and fatigue can also affect sleep, mental wellbeing and quality of life. PsA is not limited to the joints. It is also linked with an increased risk of other health problems, including cardiovascular disease, obesity, diabetes, inflammatory bowel disease and eye inflammation. Therefore, regular medical monitoring is important.

Can Joint Damage Be Prevented?

There is currently no cure for PsA, but treatments can control inflammation and reduce the risk of permanent joint damage. Treatment may include conventional disease-modifying antirheumatic drugs, biologic medicines and targeted therapies, depending on the individual's symptoms and disease pattern.

Painkillers and physical therapy may help manage symptoms, but they do not necessarily control the underlying inflammation. Treatment therefore needs to focus on suppressing disease activity as well as improving movement.

Disclaimer: This content including advice provides generic information only. It is in no way a substitute for a qualified medical opinion. Always consult a specialist or your own doctor for more information. NDTV does not claim responsibility for this information.

https://www.ndtv.com/health/they-might-amputate-my-legs-29-year-old-fights-psoriatic-arthritis-warning-signs-to-watch-for-11900593  

Are Bleach Baths Helpful for Psoriasis?

From everydayhealth.com

By Carmen Chai

While it sounds counterintuitive at first, a bleach bath is a common non-prescription option for treating eczema. (If it sounds scary, too, you might think of it as comparable to a soak in a chlorinated swimming pool.) But does this at-home remedy work for psoriasis as well?

While eczema and psoriasis are both chronic skin conditions, psoriasis isn’t driven by the same skin-barrier and bacterial colonization problems that often come up in eczema, meaning bleach baths may not have the same therapeutic effect.

Eczema is often worsened by a bacterial infection, and a bleach bath helps reduce bacteria on the skin, alleviating itching, rash, and scaling. A bleach bath involves filling a standard tub with water and half a cup of household bleach and soaking for 10 minutes before getting out and patting dry.

Though a bleach bath may not be as effective for psoriasis, that doesn’t mean it's not worth discussing with your dermatologist. But bleach baths aren't a standard psoriasis treatment backed by research, and they shouldn’t replace treatments prescribed by your doctor.

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Potential Benefits of Bleach Baths for Psoriasis

The key potential benefit of a bleach bath for psoriasis is its antimicrobial effect — but this possible link is based on research in eczema, says Marisa Garshick, MD, a dermatologist in New York and New Jersey and a clinical assistant professor of dermatology at NewYork-Presbyterian Weill Cornell Medicine.

Specifically, bleach baths may decrease Staphylococcus aureus, a strain of bacteria that’s commonly found on eczema-prone skin, according to research — and research suggests bleach baths may have an anti-inflammatory effect on eczema-prone skin, too. 

Psoriatic skin is 4.5 times more likely to be colonized by Staphylococcus aureus than skin not affected by this condition, and the bacteria may be present in psoriasis lesions in 60 percent of patients.

Bleach baths may be helpful for this subset of psoriasis patients, Dr. Garshick says. “For someone with psoriasis who experiences frequent bacterial skin infections or has . . . skin that is prone to infection, a dermatologist may consider a bleach bath as part of an individualized treatment plan,” she says. “However, it’s not considered a standard psoriasis treatment.”

Don’t expect it to help with treating psoriasis plaques or inflammation, she says. “For psoriasis, they are not routinely recommended because there is limited evidence showing they improve psoriasis itself,” she says.

There are also instances in which patients have both psoriasis and eczema — this is another group who may benefit from bleach baths, according to Deirdre Hooper, MD, a board-certified dermatologist in New Orleans.

Research suggests they can be helpful in relieving itch in moderate to severe atopic dermatitis.

“If you have pure psoriasis, no itch, and no bacterial infection, bleach baths are probably not going to be helpful for you,” Dr. Hooper says. “But a lot of people have some overlap.”

Aside from bacteria and itch, research has also suggested bleach baths work in eczema by calming inflammatory pathways, specifically NF-κB, but again, this hasn’t been established in psoriasis, says Joseph Lam, MD, a paediatric dermatologist at the BC Children’s Hospital in Vancouver, British Columbia, who is a spokesperson for the Society for Paediatric Dermatology.

“The thick plaques of psoriasis are very different from the disrupted skin barrier in patients with eczema,” Dr. Lam says. “Currently, there is no good evidence for the use of bleach baths in patients with psoriasis.”

Important Safety Caveats

A properly diluted bleach bath is generally considered safe for many people to try when used following medical guidance. But people living with psoriasis need to tread carefully, Garshick says.

“The biggest concerns are skin irritation, dryness, and burning, all of which can worsen an already compromised skin barrier,” she warns.

Bleach baths can be drying, and excessive dryness is a known trigger of psoriasis, Lam warns. Bleach can also be irritating to psoriatic skin, especially if you have raw, open lesions during a flare-up.

That matters because irritation or trauma to the skin can trigger the Koebner phenomenon, where skin trauma can cause plaques to spread to unaffected areas, Lam says.

If you have irritated, inflamed, or widespread unstable psoriasis, avoid bleach baths unless they’re specifically advised by your dermatologist, Garshick says.

Hooper’s practical rule is simple: If it stings or burns, stop. “The big warning I would call out is if you try it and it stings or irritates your skin in the bath, get out of the bath,” Hooper says. “You’re using too strong of a concentration.”

This is also why bleach should never be applied directly to psoriasis plaques. It should only be used in a very diluted bath, and only if your healthcare provider says it is appropriate for you, she says.

Talk to Your Doctor About Bleach Baths

If you are curious about bleach baths for psoriasis, have a conversation with your dermatologist before trying them out, Hooper says. This is especially important if your plaques are cracked, bleeding, crusted, painful, widespread, or showing possible signs of infection, such as warmth, swelling, pus, or increasing tenderness.

And if you’ve tried bleach baths and noticed improvement, that’s useful information to relay to your dermatologist, too, she says. It may suggest bacterial colonization, folliculitis (infection of the hair follicles), or some eczema overlap rather than bleach baths treating psoriasis directly.

“It’s complicated but important to tease out,” she says.

If a dermatologist approves a bleach bath, ask for specific instructions. Garshick says the dilution typically used for eczema is about ¼ to ½ cup of regular household bleach in a full standard bathtub, with a soak of about 10 minutes, no more than two to three times per week, and only under dermatologist guidance.

After bathing, she recommends rinsing, gently patting the skin dry, applying any topical medications as prescribed, and moisturizing immediately while the skin is still slightly damp.

Bleach baths are inexpensive, easy to set up at home, and safe if your doctor gives you the green light, Hooper says. They just may not be as effective for psoriasis. “There's nothing wrong with trying it. Just don't be frustrated if it doesn't work for you,” she says.

You can also ask your dermatologist about other options, especially if your current treatment plan isn’t working. Prescription topical therapies like corticosteroids or non-steroid treatments, biologic medications, and phototherapy when appropriate are some of the more evidence-backed options, Garshick says.

The Takeaway

• Research suggests bleach baths can reduce bacteria and ease symptoms like itch, rash, and scaling in eczema, but there’s little evidence showing they improve psoriasis plaques, inflammation, or flares.
• Avoid using bleach baths on cracked, bleeding, raw, or very inflamed plaques; burning, dryness, and irritation may worsen psoriasis or trigger new plaques on injured skin.
• Talk to your dermatologist before you try a bleach bath. Ask exactly how much bleach to use, how long to soak, and how often to do it.
• Keep in mind that better-supported psoriasis treatments are available, including prescription topical therapies, biologic medications, phototherapy, and other options your dermatologist may recommend if your current plan isn’t working.

https://www.everydayhealth.com/psoriasis/are-bleach-baths-helpful-for-psoriasis/

Have Psoriasis? Here’s What You Need to Know Before Your Next Cosmetic Treatment

From newbeauty.com

What to consider before your next injectable or laser appointment 

Psoriasis can be a very frustrating skin condition. With severity varying from person to person—from plaque location and medications used to flare frequency—these factors can influence how you approach in-office skin treatments. While patients with psoriasis can safely undergo aesthetic procedures, dermatologists say that timing, treatment selection and inflammation control are essential when it comes to choosing the right approach for you.

                                                                                                                              Photo by Fleur Kaan on Unsplash

Skin treatments to avoid if you have psoriasis

“Psoriasis doesn’t automatically mean you can’t have cosmetic procedures, but it does mean you need to be more selective and strategic,” explains New York dermatologist Jody A. Levine, MD. The biggest concern, says West Palm Beach, FL dermatologist Jacob Beer, MD, is patients experiencing “a clinical phenomenon called the Koebner phenomenon, which means that when someone experiences some form of injury, like microneedling, psoriasis plaques can appear in those areas.” Essentially, trauma to the skin can trigger new psoriasis plaques in previously unaffected places.

Because of this phenomenon, Dr. Levine generally advises patients to avoid skin treatments that can create significant or unnecessary injury to the skin during an active psoriasis flare. “This includes avoiding procedures such as microneedling, deep chemical peels, aggressive ablative laser resurfacing or other treatments that intentionally wound the skin,” she says.

Injectable fillers and neurotoxins should also be used with caution. “While not absolutely contraindicated, they should be avoided in areas of active inflammation or plaques,” says Dr. Levine. Additionally, intense pulsed light (IPL) and photodynamic therapy are also not recommended for psoriasis treatment. “The 2019 AAD/NPF guidelines specifically recommend against topical 5-ALA-photodynamic therapy or methyl ALA-photodynamic therapy for localized psoriasis,” she adds.

What to consider before going for a cosmetic treatment

Active vs. inactive psoriasis

Whether psoriasis is active or well controlled makes a significant difference in treatment planning. “Active psoriasis generally indicates a more acute or subacute disease process,” says Dr. Beer. Active psoriasis is characterized by inflamed, scaly or expanded plaques, which is when the skin is at its most vulnerable and at risk of triggering additional lesions as a result of skin trauma. During this time, dermatologists recommend postponing elective cosmetic procedures until the flare is adequately treated.

However, “when psoriasis is inactive or well controlled, patients often become candidates for a much broader range of aesthetic treatments. Even then, I still recommend proceeding cautiously, choosing less aggressive options or spacing treatments farther apart to minimize the risk of irritation,” says Dr. Levine. In fact, certain vascular laser treatments can actually help treat persistent redness associated with psoriasis, but again it depends on how well a patient’s psoriasis is controlled.

Seasonal timing

Timing of cosmetic treatments can also make a difference. “Many people notice their psoriasis naturally improves during the warmer months because moderate sunlight and higher humidity can be beneficial for the skin,” explains Dr. Levine. Conversely, she says that winter can be even more challenging, especially with cold temperatures, low humidity and indoor heating, which dries skin and can often contribute to flares even though there’s a lower risk of post-inflammatory pigmentation.

This doesn’t necessarily mean that cosmetic procedures should only be performed in the summer. “Seasonality matters less than if the psoriasis is well-controlled. If the patient is on a biologic or treatment that controls the psoriasis well, then many treatments can still be done, albeit cautiously,” says Dr. Beer.

Featured experts

• Jody A. Levine, MD is a board-certified dermatologist in New York
• Jacob Beer, MD is a board-certified dermatologist in West Palm Beach, FL

https://www.newbeauty.com/view/psoriasis-treatments-what-to-know