Health
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.”
May 10, 2024 – When we’re young, we take our macula for granted. At the center of our retina – the deepest layer of the eye that’s chock-full of photoreceptors and that confers color to our world – the macula is like a high-resolution camera. As light hits our eyes, the retina’s macula recasts our world in a bloom of color with astoundingly high visual sharpness.
But as you age, your vision dulls. What once stood out sharply becomes foggy, like condensation on a windowpane. After some time, a coal-black smudge or cloudy circular area begins to affect your central vision.
This effective blind spot widens over time if left untreated. What remains is a “macular hole” in the center of your retina.
This unfortunate series of events marks the advanced stage of age-related macular degeneration, a dangerous retinal disease that affects about 20 million people in the U.S., and nearly 200 million people worldwide.
And it’s not getting better. Estimates are that by 2040, the disease may affect nearly 300 million people worldwide. We are very limited in our ability to treat or prevent it. Read on for what to know.
First, What Causes Age-Related Macular Degeneration?
AMD’s causes are varied, and whether it will affect you is mostly determined by age and genetics, said Marco Alejandro Gonzalez, MD, an ophthalmologist and vitreoretinal specialist in Delray Beach, FL.
Because of the different cocktails that we have in terms of our genetic makeup, some people’s photoreceptor cells in the macula “basically start to shut down,” he said.
AMD’s development involves over 30 genes, and if you have a first-degree relative – parent, sibling, child – who has the disease, you’re three times more likely to get it, too.
Gonzalez explained how the expected rise to 300 million cases by 2040 is due mostly to improved diagnostic tools, along with the fact that the world is getting older and living longer. (Usually, an optometrist can detect signs of AMD during a routine eye exam.)
Eye experts still struggle to stop AMD’s most harmful sign – the cause of those muddy, milky, or even coal-colored circles in your central vision: geographic atrophy.
Geographic atrophy can occur in either of the two forms of age-related AMD: “dry” AMD and “wet” AMD.
Nearly every case of AMD begins as the dry kind, affecting 80% to 90% of AMD patients.
Retinal disease expert Tiarnán Keenan, MD, PhD, offered a vivid image of geographic atrophy for those who have dry AMD.
“As time passes, the circular patches of GA expand like a brushfire, taking more and more vision with it, often to the point of legal blindness,” he said.
A researcher in the Division of Epidemiology and Clinical Applications at the National Eye Institute, Keenan recently led a study that tested the efficacy of the antibiotic minocycline in slowing geographic atrophy expansion in dry AMD. The study operated on the grounds that the body’s immune system could be at play in developing the disease.
When your body’s immune system is overactive, microglial cells (central nervous system immune cells) can get into the sub-retinal space and possibly eat away at the macula and its sensitive photoreceptors.
Though minocycline had been shown to reduce inflammation and microglial activity in the eye in diabetic retinopathy, it didn’t slow the expansion of geographic atrophy or vision loss in patients with dry AMD during Keenan’s study.
When asked if microglial activity could have very little to do with the atrophy expansion, Keenan said it’s something to consider: “Maybe microglia are just there as bystanders clearing up the debris … so inhibiting them is less likely to slow down progression.”
In future drug trials, “maybe it’s possible the minocycline or another approach to target microglia would be helpful, but it would be needed in combination with some other therapy and be ineffective by itself,” he said.
Two Sides of the Same Disease
In dry AMD, Gonzalez compares macular degeneration to the loss of pixels on a screen. “Some of those pixels burn out … and that’s the way you lose vision classically in the dry form.”
Wet AMD is a more progressive form of the disease. It causes abrupt vision loss due to abnormal blood vessel growth.
“If you don’t treat wet AMD quickly, it’s game over,” warned Gonzalez. “Wet macular degeneration is the quicker process of vision loss because these blood vessels wreak havoc.” These new blood vessels bleed, causing fluid to build in the macula, which ultimately leads to scarring.
Gonzalez shed light on why wet AMD develops. “The wet form, for some reason, is the body’s last-ditch effort to try to kind of ‘help’ a dying macula. … When these blood vessels start to grow under the retina, they quickly destroy the architecture of the macula.”
Stopping the Bleeding in Wet AMD
Though wet AMD is rarer, it’s more treatable than dry AMD. Signs and symptoms can be eased with various therapies injected into the eye.
Putting it simply, Gonzalez said these therapies to treat wet AMD “all basically do the same thing. They make these new blood vessels regress temporarily before they cause damage to the macula.”
The injected medication clears away those blood vessels and restores the architecture of the macula. People can recover some vision in this way, but it’s only a temporary tune-up, and shots must be given as often as once a month.
“Degeneration of the cells is still the main problem. You’re not stopping that. But degeneration itself is a lot slower than actual vision loss associated with these blood vessels.”
The Struggle in Developing New Treatments
According to Keenan, “nobody has been able to stop geographic atrophy from happening” in either form of AMD. “So, that’s the main work in the field with trials.”
In December 2023, the FDA approved two new drugs: Syfovre and Izervay, both of which only slow geographic atrophy. Degeneration still happens, regardless.
Keenan explained how these two new drugs are “complement inhibitors … given by injection into the eye once a month or so.”
“Complement” refers to the body’s complement pathway, a trigger that activates a cascade of proteins in enhancing immune response.
Clinical trials showed Syfovre slowing the rate of geographic atrophy by up to 22% over 2 years, and Izervay up to 14% over 1 year.
Though these drugs are a new weapon against this troublesome affliction, they aren’t without their complications.
“Anytime you give an injection in the eye, there’s always the risk of an infection because you’re introducing something from the outside. So that’s the biggest risk,” explained Gonzalez.
An infection is uncommon, but potentially devastating, as you can lose your eye altogether. There’s also the chance of a damaging reaction to the shot.
“You have to pick and choose your patients,” said Gonzalez. “Not everybody is a good candidate for those new shots … and the patient is never going to see better. … It’s a harder sell than the ones for wet AMD.”
A Common Protective Measure
Keenan and Gonzalez both have a fair degree of confidence in reducing the risk of AMD with vitamin therapy.
As a bit of background on how vitamins were found to act as a sort of preventive measure, Gonzalez said, “In the early and late ‘90s, there were series of studies which were called the age-related eye disease studies.” These are now referred to as AREDS 1 and AREDS 2.
Researchers proved that a certain cocktail of vitamins slowed down degeneration. The most is a combo of antioxidants: vitamins C and E and lutein and zeaxanthin, all of which are in the AREDS 2 formula.
People who took these vitamins had a lower chance of losing their vision over the next 2 to 5 years. “[The combo] seems to be complementary and additive … with a combined treatment effect of 55% to 60%, an excellent safety record, and very low cost,” Keenan said.
Gonzalez recommends the AREDS 2 formula of vitamins to every patient of his. “It’s such an easy thing to take, and the downside is minimal.”
Unfortunately, if your genes make you more likely to have the condition, a change in diet or vitamin use could have no effect.
Dire? Possibly. But not all is lost in this fight.
Vigilance with AMD and What to Do Next if You’re Diagnosed
Gonzalez is adamant in educating his patients before time has run out on treating AMD. Recognition is key. “The most common reason a lot of these people get to me ‘too late’ is they don’t realize there’s a problem.”
He explained a typical scenario: “Let’s say you have macular degeneration in both eyes at different stages. One of your eyes starts developing wet macular degeneration … so the better eye takes over and you may not notice there’s a problem.”
Even after a patient is diagnosed with AMD, they usually see a specialist only twice a year. Gonzalez often tells his patients to cover one of their eyes to make sure their vision is intact in both eyes. “You’ll be able to pick up on subtle differences” in each eye, he said.
This type of self-care and vigilance can be the difference between successfully living with and treating the disease for the rest of your life, and trying to get help when it’s simply too late.
For wet AMD, as mentioned before, a round of injections is basically what everyone does. Without quick, invasive treatment, the point of no return approaches rapidly.
May 16, 2024 – Multiple U.S. agencies are working to contain the recent bird flu outbreak among cattle to prevent further spread to humans (beyond one case reported in early April) and use what we learned before, during, and after the COVID-19 pandemic to keep farm workers and the general public safe.
Fingers crossed, the bird flu will be contained and peter out. Or the outbreak could continue to spread among dairy cattle and other animals, threatening the health and livelihoods of farmers and others who work with livestock.
Or the virus could change in a way that makes it easier to infect and spread among people. If this happens, the worst-case scenario could be a new influenza pandemic.
With so many unknowns, WebMD brought together experts from four federal agencies to talk prevention, monitoring, and what the “what ifs” of bird flu might look like.
Communication with the public “about what we know, what we don’t know, and ways you and your family can stay safe is a priority for us at CDC,” said Nirav D. Shah, MD, JD, the CDC’s principal deputy director. “We at the federal level are responding, and we want the public to be following along.”
People should consult the websites for the CDC, FDA, U.S. Department of Agriculture (USDA), and the Administration for Strategic Preparedness and Response (ASPR) for updates.
It is essential to not only stay informed, but to seek trusted sources of information, Shah said during “Bird Flu 2024 – What You Need to Know,” an online briefing jointly sponsored by the CDC and WebMD.
An ‘Experimental Hamburger’
If one take-home message emerged from the event, it was that the threat to the general public remains low.
The retail milk supply is safe, although consuming raw or unpasteurized milk is not recommended. “While commercial milk supply is safe, we strongly advise against drinking raw milk,” said Donald A. Prater, DVM, acting director for the FDA’s Center for Food Safety and Applied Nutrition.
As for other foods, thoroughly cooked eggs are less risky than raw eggs, and the nation’s beef supply remains free of the virus as well.
For years, federal inspectors have purchased and tested meat at retail stores, said Eric Deeble, DVM, USDA deputy assistant secretary for the Office of Congressional Relations. So far, H5N1, the virus behind bird flu, has not been detected in beef.
The USDA took testing a step further and recently cooked ground beef from dairy cows in their lab. Using what Deeble described as an “experimental hamburger,” the agency showed cooking beef to 165 F or higher kills the virus if it ever becomes necessary.
The federal government now requires all cattle be tested and be free of bird flu virus before crossing any state lines. The government is also reimbursing farmers for veterinary care and loss of business related to the outbreak, and supply personal protective equipment (PPE) like gloves, masks, and face shields to workers.
Vaccination Not Recommended Now
Federal scientists know enough about H5N1 virus to create vaccines against it quickly if the need arises. It’s more about planning ahead at this point. “Vaccines are not part of our response right now,” said David Boucher, PhD, director of infectious diseases preparedness and response at the Administration for Strategic Preparedness and Response.
If the virus changes and becomes a bigger threat to people, “we have the building blocks to produce a vaccine,” Boucher added.
An event attendee asked if the seasonal flu shot offers any protection. “Unfortunately, the flu shot you got last year does not provide great protection from the avian flu,” Shah responded. “It might do a little bit … but that is the vaccine for seasonal flu. This is something more novel.”
Treatments Stockpiled and Ready
Antiviral medications, which if given early in the course of bird flu infection could shorten the severity or duration of illness, are available now, Shah said. The dairy farmer who was infected with bird flu earlier this year responded to oseltamivir (Tamiflu) treatment, for example.
When it comes to bird flu symptoms, the fact that the only infected person reported so far this year developed pink eye, also known as conjunctivitis, is interesting, Shah said. Officials would have expected to see more typical seasonal flu symptoms, he added.
“Influenza is not a new virus,” Boucher said. “With this strain of influenza, we are not seeing any genetic markers associated with resistance to antivirals. That means the antivirals we take for seasonal influenza would also be available if needed to treat H5N1.”
ASPR has stockpiled Tamiflu and three other antivirals. “We do have tens of millions of courses that can be distributed around the country if we need them,” he added.
“Influenza is an enemy we know well,” Boucher said. That is why “we have antivirals ready to go now and many types of PPE.”
Science in Action
The feds intend to stay on the case. They will continue to monitor emergency department visits, lab test orders, and wastewater samples for any changes suggesting a human pandemic risk is growing.
“While we’ve learned a great deal, there are still many things we do not know,” Deeble said.
Shah added, “As in any outbreak, this is an evolving situation and things can change. What you are seeing now is science in action.”
For the latest updates on bird flu in the United States, visit the CDC’s H5N1 Bird Flu: Current Situation Summary website.
May 16, 2024 – Multiple U.S. agencies are working to contain the recent bird flu outbreak among cattle to prevent further spread to humans (beyond one case reported in early April) and use what we learned before, during, and after the COVID-19 pandemic to keep farm workers and the general public safe.
Fingers crossed, the bird flu will be contained and peter out. Or the outbreak could continue to spread among dairy cattle and other animals, threatening the health and livelihoods of farmers and others who work with livestock.
Or the virus could change in a way that makes it easier to infect and spread among people. If this happens, the worst-case scenario could be a new influenza pandemic.
With so many unknowns, WebMD brought together experts from four federal agencies to talk prevention, monitoring, and what the “what ifs” of bird flu might look like.
Communication with the public “about what we know, what we don’t know, and ways you and your family can stay safe is a priority for us at CDC,” said Nirav D. Shah, MD, JD, the CDC’s principal deputy director. “We at the federal level are responding, and we want the public to be following along.”
People should consult the websites for the CDC, FDA, U.S. Department of Agriculture (USDA), and the Administration for Strategic Preparedness and Response (ASPR) for updates.
It is essential to not only stay informed, but to seek trusted sources of information, Shah said during “Bird Flu 2024 – What You Need to Know,” an online briefing jointly sponsored by the CDC and WebMD.
An ‘Experimental Hamburger’
If one take-home message emerged from the event, it was that the threat to the general public remains low.
The retail milk supply is safe, although consuming raw or unpasteurized milk is not recommended. “While commercial milk supply is safe, we strongly advise against drinking raw milk,” said Donald A. Prater, DVM, acting director for the FDA’s Center for Food Safety and Applied Nutrition.
As for other foods, thoroughly cooked eggs are less risky than raw eggs, and the nation’s beef supply remains free of the virus as well.
For years, federal inspectors have purchased and tested meat at retail stores, said Eric Deeble, DVM, USDA deputy assistant secretary for the Office of Congressional Relations. So far, H5N1, the virus behind bird flu, has not been detected in beef.
The USDA took testing a step further and recently cooked ground beef from dairy cows in their lab. Using what Deeble described as an “experimental hamburger,” the agency showed cooking beef to 165 F or higher kills the virus if it ever becomes necessary.
The federal government now requires all cattle be tested and be free of bird flu virus before crossing any state lines. The government is also reimbursing farmers for veterinary care and loss of business related to the outbreak, and supply personal protective equipment (PPE) like gloves, masks, and face shields to workers.
Vaccination Not Recommended Now
Federal scientists know enough about H5N1 virus to create vaccines against it quickly if the need arises. It’s more about planning ahead at this point. “Vaccines are not part of our response right now,” said David Boucher, PhD, director of infectious diseases preparedness and response at the Administration for Strategic Preparedness and Response.
If the virus changes and becomes a bigger threat to people, “we have the building blocks to produce a vaccine,” Boucher added.
An event attendee asked if the seasonal flu shot offers any protection. “Unfortunately, the flu shot you got last year does not provide great protection from the avian flu,” Shah responded. “It might do a little bit … but that is the vaccine for seasonal flu. This is something more novel.”
Treatments Stockpiled and Ready
Antiviral medications, which if given early in the course of bird flu infection could shorten the severity or duration of illness, are available now, Shah said. The dairy farmer who was infected with bird flu earlier this year responded to oseltamivir (Tamiflu) treatment, for example.
When it comes to bird flu symptoms, the fact that the only infected person reported so far this year developed pink eye, also known as conjunctivitis, is interesting, Shah said. Officials would have expected to see more typical seasonal flu symptoms, he added.
“Influenza is not a new virus,” Boucher said. “With this strain of influenza, we are not seeing any genetic markers associated with resistance to antivirals. That means the antivirals we take for seasonal influenza would also be available if needed to treat H5N1.”
ASPR has stockpiled Tamiflu and three other antivirals. “We do have tens of millions of courses that can be distributed around the country if we need them,” he added.
“Influenza is an enemy we know well,” Boucher said. That is why “we have antivirals ready to go now and many types of PPE.”
Science in Action
The feds intend to stay on the case. They will continue to monitor emergency department visits, lab test orders, and wastewater samples for any changes suggesting a human pandemic risk is growing.
“While we’ve learned a great deal, there are still many things we do not know,” Deeble said.
Shah added, “As in any outbreak, this is an evolving situation and things can change. What you are seeing now is science in action.”
For the latest updates on bird flu in the United States, visit the CDC’s H5N1 Bird Flu: Current Situation Summary website.
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