Category: Health

By David Rosmarin, MD, as told to Stephanie Watson

Treating psoriatic disease is very different from what it was 10 or 20 years ago.

We have a lot of great treatment options that are extremely effective. So we’re usually able to meet a vast majority of people’s goals.

When someone first comes to me with a diagnosis of psoriatic disease, I’m very interested to learn what their goals are. It’s important for them to communicate to me what they want to accomplish with their treatment, and how quickly they want to get there. That way, I can deliver the right treatment to them.

So I ask questions like:

How quickly do you need clear skin? Do they have a big event coming up? Do they want to be clear for a vacation? Whether they need to see a response in a month, or they aren’t interested in a quick fix will help guide the treatment we choose.

For example, if somebody wants a very rapid response, then we can use a medicine that suppresses the immune system, or a biologic that works quickly. When we do that, on average, people can see a 50% improvement in their skin within 2 weeks, and a 75% improvement within a month.

How clear do you want it? Do they want to have their legs clear so they can wear shorts in the summer? Do they want to get their scalp cleared so they don’t have to deal with flakes? Do they want to get rid of the itch?

We also talk about their nails if they’re a concern. That’s helpful to know upfront, because nails can take longer to clear than skin.

What is your treatment tolerance? Biologics are targeted treatments that have revolutionized how we help people with moderate to severe psoriasis. The ones we use to ease inflammation come as injections or infusions. So, are they fearful of needles? If so, it may be better for them to go on a treatment that involves an injection once every 3 months, rather than once a week. We also have other alternatives like oral medications, phototherapy, and topicals.

Overall, the side effects of biologics aren’t too bad. Infection is a little bit more likely, as is a reaction near the injection site. But compared to the first biologics we had, the newer ones work better with fewer injections, and they don’t hurt as much.

They’re safer, too. For example, newer biologics don’t raise your chances of cancer.

Still, it’s important for me to know a person’s concerns and their medical history before I prescribe them a drug.

Are your joints involved? I ask all of the people I treat if they have joint pain or stiffness. If they do, they might have psoriatic joint disease. That means I need to give them a plan that will treat both skin and joints. I may collaborate with a rheumatologist on their care.

Roadblocks to Relief

One of the biggest barriers we face in getting people the right treatment is insurance. Some of these medications can be quite expensive. Insurance plans may prefer that we start with a certain treatment. They want “treatment A” first, even though we want “treatment B.” Most times, that’s based on cost.

For example, for people who are insured through an employer plan, many pharmaceutical companies have programs in place to get them directly to the medicine they need. Other than a small copay, they’ll cover the entire cost of the medicine. For people of low income, foundations can help them afford their meds.

Weight can be another stopper to relief. Some people with psoriasis are overweight. Those who are heavier may have more severe disease. Sometimes, weight loss can help their treatment work better.

Be Honest

The more open you are about your disease and how it affects you, the more productive your doctor visits will be. Come to each appointment ready to share your concerns. That includes talking about sensitive subjects like how your psoriasis affects your genitals. It’s important to realize that these visits are confidential. You can’t get relief if you don’t tell your doctor about the problems you’re having.

If your disease is starting to get worse, don’t wait until your follow-up visit to tell your doctor. Let them know right away. You might want to send in photos to show what you’re going through.

If people have side effects from their medication, like coughing or shortness of breath, any recent infections, or anything they’re unsure of related to their medication, I always prefer that they call and ask. We can either reassure them or take steps to treat the problem.

For example, if your skin is getting worse right before you’re due for your next injection, your doctor might need to bump up the dose. If you’re no longer responding to your meds or you never reached your initial goal, your doctor might add a topical or switch you to a different medication. Some of these drugs can lose effectiveness over time.

Stick With Your Plan

We can’t cure psoriasis, we can only control it. It’s like having high blood pressure or high cholesterol. You need to stay on your regimen. If you go off your psoriasis medication, the disease will come back.

You don’t want to start and stop your medicine, because that will lead to poorer control of your disease. And it becomes more likely that the drug will stop working for you. It can be hard to think about staying on a medicine indefinitely, but these drugs are safe over the long term.

Psoriasis medications are very effective. Some of them improve the disease an average of 90% after 4 months, and 95% after a year. Some can even get people completely clear.

It’s great to be a physician treating these people, because I can make a big impact on their quality of life.

A couple of times a month, Mariela Loera goes knocking on doors in California’s Eastern Coachella Valley. Part of her job, as a policy advocate with the nonprofit Leadership Counsel for Justice and Accountability, is to provide a listening ear to members of the community, many of whom work in the region’s lush farms cultivating citrus, dates, and other winter crops.

Most of the people Loera speaks with are middle-aged mothers. At nearly every house, she hears the same thing: “One or more of my kids has asthma or some sort of respiratory illness.” If it’s summer, she might hear complaints of headaches and nosebleeds due to the poor air quality.

“It’s the same story that’s repeated with nearly everyone I talk to,” says Loera, who has been working with community members for close to 2 years. “People are trying to understand why this is happening.”

In most instances, whittling a disease down to a single cause is difficult, if not impossible. But in the case of the Eastern Coachella Valley, one culprit looms large: the nearby Salton Sea. “It’s definitely one of the main contributors to the air quality in the region, and therefore symptoms,” says Loera.

The problem with the 340-square-mile Salton Sea– whose name is a misnomer, as it’s actually California’s largest lake – is that it’s shrinking. It’s a fate faced by a handful of other lakes around the country and throughout the world – the result of upstream water diversions, global warming, human mismanagement, and other factors. 

Owens Lake in California, for instance, has shrunk to less than a third of its former area; while the Great Salt Lake in Utah reached its lowest level since 1847 this July. Iran’s Lake Urmia, once the largest lake in the Middle East, has shrunk by nearly 90% over the past 3 decades; while Bolivia’s Lake Poopó dried out completely in 2015.

As lakes vanish, they leave behind a host of problems: wildlife declines; tourism ebbs away; people are displaced and livelihoods suffer; weather patterns are altered; and water gets scarce, which in turn impacts local agriculture and food supply. 

Its impacts on human health are also severe. As the water disappears, it exposes the lakebed, or playa – which can quickly dry out to form a layer of sediment and dust, says Michael Cohen from the Pacific Institute, an Oakland, CA-based think tank that focuses on water issues. At the Salton Sea, for instance, more than 18,000 acres of shoreland has been exposed since the early 2000s.

When winds kick up this dust, fine particulate matter “gets airborne and entrained in the air,” says Cohen, who has been studying the Salton Sea for over 2 decades. The particles “can travel for long distances and can get inhaled by people.”

Breathing those particles can inflame the lungs, says Kent Pinkerton, PhD, a professor of pulmonary pathology at the University of California, Davis. “Inflammation is not always bad, it’s a natural process that helps in the clearance of particles.” 

But when there’s too much dust, “you begin to see injury and damage and death of lung cells,” he says. “When particles get down into the deep lung cells that line the alveoli, where we have gas exchange and that’s extremely delicate … it can be extremely problematic.” 

The result is respiratory issues such as asthma, allergies, and chronic sinus infections. Young children, whose immune systems and lungs are still developing, are especially vulnerable. Roughly one in five children have asthma in Imperial County, south of the Salton Sea, which also sees the highest rates of childhood asthma hospitalization and emergency room visits (double the state average).

Left unchecked, the exposed lakebed could release up to 100 tons of dust daily, incurring some $37 billion in associated health care costs by 2047, estimates the Pacific Institute. 

To make matters worse, extremely fine particles can penetrate the lung epithelium and enter the circulatory system, potentially causing cardiovascular problems, says Pinkerton. “This could lead to plaque formation, vascular obstruction, myocardial infarction of the heart, or just simply inflammation of the heart tissue.” Those most at risk include young children, the elderly, and those with other respiratory or heart conditions.

Efforts to address the problems are already underway, largely focusing on suppressing dust from dried-out lake beds. This can take various forms, depending on individual lake makeup and the desired outcomes, says Armistead Russell, PhD, an air pollution expert at the Georgia Institute of Technology who was on an Owens Lake scientific advisory panel. 

At Owens Lake – now the largest source of man-made dust in America, after it was drained in the 1920s to meet the water needs of a growing Los Angeles – the favored approach is shallow flooding, he says. The efforts have reduced air pollution levels in the area over the last 2 decades: In 2018, there were only 8 days when PM₁₀ levels (a measure of inhalable particles 10 micrometers and smaller) exceeded healthy levels, as compared to 49 days in 2002.

A similar solution is now being explored at the Salton Sea. But these dust suppression measures come at a steep cost: the Los Angeles Department of Water and Power had spent an estimated $2.1 billion on Owens Lake as of May 2019, and some 31% of its fresh water supplies on efforts to address the problem. Over at the Salton Sea, a project that aims to capture water and spread it across 4,000 acres of the dry lakebed is projected to cost some $206 million.

Thankfully, there are other options too. These include covering the playa with gravel, plowing the land to roughen its surface, planting special salt-tolerant plants to hold the dust down, and building sand fences or straw bales. “The idea is to minimize or eliminate the dust from these exposed areas,” says Cohen. 

But it isn’t just the size of the airborne particles that’s problematic; it’s their content. Dried-out beds of saline lakes, such as the Salton Sea, tend to be rich in sodium chlorine, magnesium, and other minerals. But they can also contain harmful chemicals.

The water flowing into the Salton Sea, for instance, comes from agricultural runoff. “There’s a lot of pesticides used in the area … and some heavy metals like selenium out there too,” says Cohen. “When these enter your nervous system, they also prompt an immune response.” 

The Aral Sea, between Kazakhstan and Uzbekistan, provides a cautionary tale. Once the world’s fourth largest saline lake, it has shrunk to 25% of its original size over the past 50 years. Its soils are contaminated with heavy metals such as lead and radium, as well as toxic pesticides like DDT leached from nearby cotton fields. This has been linked to numerous problems in the area – above-average rates of anemia, tuberculosis, kidney and liver diseases; lowered life expectancy (51 years, down from 64); and high levels of infertility and reproductive issues.

There, local authorities have tried a different remedy: restoring the lake by reducing water withdrawals from one of its tributaries, the Syr Darya river. They’ve had moderate success.

Physical afflictions aside, vanishing lakes can also affect the mental health of residents living close by. “Younger folk definitely talk about short-term stress, worrying about things like ‘How’s today going to go for me health-wise?’” Loera says of the people she talks to in the Eastern Coachella Valley. 

“But also thinking about this long-term – ‘I want to go to college and do something for my community, but do I really want to stay here and continue to live here?’” she says.

Which is why Loera and her team at the Leadership Counsel, as well as other grassroots organizations such as Comite Civico del Valle and Alianza Coachella Valley, spend time meeting with affected community members, getting them involved in efforts to save nearby lakes, listening to their health concerns, and offering advice on protection measures.

The advice includes taking “safety measures when the air quality is not so good,” says Pinkerton. For example: staying indoors, driving with the air-conditioning on, and wearing a protective N95 mask.

“And just being aware of your body,” he says. “If you find yourself coughing, if your eyes are irritated or watering, if you start feeling fatigued or that your heart is beating fast – these are all symptoms that should tell you: ‘OK, maybe it’s time for me to either put on that mask or go indoors and take it easy.”

Despite the challenges that lie ahead, Loera remains upbeat. “The impressive thing to me is that the community around the Salton Sea is really resilient,” she says. “They’re really collaborative. They see the lake as part of their home.”

By Julie Greenwood, as told to Keri Wiginton

Biologics gave me my life back. Once I took the medicine, my skin became human again. And I changed from a person who couldn’t function at all to someone who’s been able to work for years.

I tried my first biologic in 2003. But that’s not where my story begins.

When my psoriatic disease started in 1991, my dermatologist put me on methotrexate right away. That’s a drug used to treat joint inflammation, but I didn’t know anything about it. I was only 23, and they gave me this pill with no mention of side effects. It made me so sick that I decided to stop taking it.

But I have severe psoriatic disease. Over the years, it continued to progress. My fingers swelled up like sausages. I couldn’t step off a curb unassisted or stand up straight. I was hunched over like a little old woman because my back hurt so bad.

My skin symptoms got worse, too. My psoriasis started in my scalp, then showed up in my ears and went down my back to just below my knees. My skin was so tight that just moving would make it crack and bleed.

It felt like I was wearing reptile skin.

Years of Frustration

I tried all kinds of things to make my skin more human. I even ordered a product from the back of a magazine. It was banned in the U.S, and it burnt my skin. But it also got rid of my plaques. I have scars under my breasts from it.

But I was desperate. I would’ve put acid on my skin if it would’ve worked.

I also tried messy steroid creams. But I could only get them with a prescription. My doctor would give me this tiny little tube for a whole month. I have psoriasis all over my body, so that tube would last maybe a few days.

I also tried something called Goeckerman therapy. They put me in a UVB-light machine in the mornings. Then they’d slather me in coal tar and cover me in plastic wrap and I’d sit in a room all day. And this was before we had smartphones to entertain ourselves.

That worked, but only for a few weeks.

Then, when I was 31, I got pregnant. My symptoms went into complete remission. I hoped my body would forget I had psoriatic disease. But everything started up again a couple of months after my daughter was born.

Finding a Biologic

I thought that if pregnancy could put me into remission, there must be something that could help me feel better. I was determined to find that treatment. My dermatologist put me in a study where they gave me a diabetic medicine. It was amazing. But then they changed me to a different study drug, and my symptoms came back.

I went back to my doctor and asked, “What else do you have?” Then he told me about a biologic drug. At first, I said no. I wasn’t interested in giving myself a shot. I was terrified of needles.

That’s when my doctor gave me some tough love.  He said I’d have to go to someone else if I wasn’t willing to try it and that there wasn’t anything else he could do for me.

That sounds really harsh when I say it out loud. But I understand why he said it like that.

My doctor went over all the pros and cons of biologics. I didn’t have the same kind of fear about this drug that I did about methotrexate. I think the main reason was because I’d gone through so much pain during the previous 10 years. What’s more, I’d had those months of remission, so I knew what it felt like to feel good again.

When My Symptoms Improved

I found it very hard to give myself that first shot. But I did it in my doctor’s office. A couple of days after that first shot, I remember saying to my parents, “I might be crazy, but I think I’m starting to feel better.”

Within a couple of weeks, my skin started to clear up. And it was completely clear after about 6 weeks. But what was really noticeable was that after only 2 weeks, I could walk like a normal person. My constant pain eased.

Biologics helped me do everyday things that people without psoriatic disease might take for granted. I could do normal mom things, like pick my daughter up and put her in the sink to take a bath. Not long after that, I could lean over to put her in the bathtub. I could bend and stretch my body without cracking my skin.

And then there were my sheets. I’d always treated them as disposable. I’d bleed on them, and all the stuff I put on my skin would rub off. I could only keep them for a few months before throwing them out. Now I only have the best sheets.

Considering Side Effects

I know that biologics raise your odds for infections. But I wasn’t really worried about that. I was more concerned that’d I’d get cancer or have a seizure. My doctor reassured me and helped me feel better.

My teenage daughter also has psoriatic disease and is on a biologic. She was very comfortable starting her treatment, partly because I’ve been on them for so long. Plus, I do a lot of advocacy work. I’m always telling people they should be more afraid of the progression of psoriatic disease than of the biologics themselves. She’s heard that so many times that she knew not to let her disease go untreated.

Now when I look at it, my thought is: If I do have a higher chance of health problems after taking a biologic for so long, at least I’ve boosted my quality of life for all of these years. It would have been so poor without the medicine. That wouldn’t have been a life worth living.

Changing Biologics

I’ve been on a different drug for a little more than a year now. I’m always afraid of trying a new medication. It’s the most stressful part about my treatment. I’ve had pretty serious allergic reactions to infusions with biologics before.

My doctor is very cautious about changing my medicine. They only do it if I stop responding to treatment — my joint inflammation gets worse, for example. When I do make a switch, I’ll ask my husband to check on me through the night.

Going Forward

Only recently has my disease made it so I can’t keep working. I was really hard on myself about that. I felt like a failure. But then I remembered something: I worked for three decades beyond my diagnosis. I have to stop and remind myself of what a major achievement that is. I’m actually a badass who’s pretty amazing.

I still have a moderate level of pain that’s only gotten worse with my age. I’m 52 now. But it’s unbearable to think about what my life would’ve been like without these drugs. I’ve gone through hard times, even recently, with my mental health. But if somehow all of the biologic companies shut down tomorrow, I don’t know what I’d do.

It takes a lot of effort and energy to live with psoriatic disease. And it’s because of this medication that I can do it. I’m so incredibly thankful. 

Julie Greenwood is an advocate and volunteer with the National Psoriasis Foundation, National Patient Advocate Foundation, and Patient-Centered Outcomes Research Institute. She lives in Cary, NC, with her husband, Scott, daughter, Nora, and their two puggles, Molly Malone and Cassie.

Oct. 10, 2022 – Are there “cool kids” in science? Yes, there are – and that may be limiting up-and-comers from getting new research out into the world.  

“Researchers who have a good reputation, are from very prominent universities, and are from the U.S. probably have a higher chance of getting their work into a good journal than does someone whose work is equally good but is a young PhD from an obscure university or country,” says Juergen Huber, PhD, of the University of Innsbruck, in Austria. 

There’s a reason for that, says Huber, and it’s called status bias – our tendency to favor the work of someone we know. It’s a bit like the popular kid at school getting picked first for kickball. We go with who we recognize, respect, or want to be liked by.   

A new study, co-authored by Huber, reveals how this status bias can impact peer review, an important part of scientific publishing. 

“[Expert reviewers] read the paper and decide if it is scientifically significant enough to be published in a journal,” says Sabiou Inoua, PhD, another co-author of the study. 

A peer-reviewed paper is the gold standard in the research world. As a result, researchers need to get their work peer-reviewed to validate their findings. But when status bias jeopardizes this process – as Huber and Inoua’s research suggests it does – it could hold new research back, impeding progress in every field from medicine to public policy.   

What the Researchers Did

For the study, the researchers distributed a finance paper to more than 3,300 peer reviewers, presenting it three ways: 

1. For some, the paper was credited to Vernon L. Smith, a Nobel laureate and prominent study author.
2. For others, it was credited to Inoua, an “early-career research associate” with 42 Google Scholar citations (compared to Smith’s 54,000 citations). 
3. In a third version, the paper was anonymous, with no study author listed. 

Reviewers first need to decide whether to read a work at all. In the study, 31% agreed to read the anonymous paper, compared with 28.5% who chose to read Inoua’s work. For Smith, the review rate improved to 38.5%. 

That means the anonymous author had a better chance of having their work read than the less recognized author, and the Nobel laureate had a better chance still. 

The differences were even more noticeable when it came time to accept (or reject) the paper. When the Nobel laureate was listed, 23% of reviewers rejected the paper. Anonymous was turned down by 48%. And a whopping 65% deemed the paper unfit for publishing when the author was the rookie researcher.

Remember, this was the same paper. The only difference was the author. 

“The rejection rate is three times as high for low-prominence authors, implying that they have much lower chances of getting published,” Huber says. “As publishing is crucial, especially for early-career researchers, that is quite bad news.”

Is It Time to ‘Fix’ Peer Review? 

This study adds to growing scrutiny of the peer review process, including whether it may be prone to other kinds of bias, such as racial or gender bias. (It also comes amid a waning pandemic, after an urgent need for COVID treatments prompted many researchers to bypass peer review altogether, pushing papers straight to print to get them out faster.)

One potential solution could be to use a double-anonymized peer review system, where the reviewer and author remain anonymous. 

The problem: “Many papers awaiting peer review have already been presented in some form at conferences, or are otherwise available on the web,” Huber says. So, a single Google search could easily expose an author’s identity.

But Huber feels confident that change is on the horizon. 

“Members of the scientific community are very interested and ready to take action,” he says. “Some processes need to change. There is a lot of potential for the 300-year history of peer review to take the next step.” How the process will change is not yet known, but being aware of the problem is the first step.

By Richard Fried, MD, PhD, as told to Hallie Levine

As both a dermatologist and psychologist, I have studied the relationship between mental health and psoriatic disease for years. Many people don’t realize psoriatic disease affects more than just your skin. This condition activates your own immune system to attack itself. This can lead to symptoms such as skin discoloration (psoriasis) or joint swelling (psoriatic arthritis). But it can also cause inflammation that we can’t always see. This can lead to other health conditions, such as cardiovascular disease, type 2 diabetes, and even mental health disorders such as anxiety and depression.

It’s hard to tease out whether psoriatic disease causes depression, or vice versa. Psoriatic disease is itself capricious. There’s no way to tell when you wake up each morning whether it will be a good, bad, or ugly day. The disease seemingly does what it wants, when it wants. It’s a messy condition: Psoriasis itself often leaves a visible path of scales and blood-tinged fluids on your body, and psoriatic arthritis can cause physical pain. Oftentimes, patients will tell me that they never appreciated how bad the disease felt until they start to feel better.

The Brain-Inflammation Connection

We think psoriatic disease itself is triggered by a mix of genes and environment. Some people are just genetically predisposed to it, then a trauma comes along — a bug bite, or an infection, or stress — and your immune system goes into overdrive. The same cytokines, or inflammatory chemicals, that cause symptoms in your skin and joints also cross the blood-brain barrier and enter your central nervous system. They then act on your synapses, the junctions of your nerve endings and brain, to reduce levels of brain chemicals such as serotonin, norepinephrine, and dopamine. This in turn can trigger mental health conditions such as depression, anxiety, and obsessive-compulsive disorder (OCD).

The good news is that a class of drugs that is used to treat psoriatic disease known as biologics also seems to help improve symptoms of depression and anxiety. It makes sense: Biologics work by binding up inflammatory cytokines so that they can no longer wreak havoc in your skin, joints, or in your brain. They also, of course, can help improve mental health because they relieve symptoms of active psoriatic disease. If your skin improves and your joints hurt less, you feel more comfortable doing normal activities such as socializing, exercising, or even going to work.

Recognizing the Subtle Signs

Most of us understand the classic symptoms of depression such as low energy, feeling sad or angry, withdrawal from others, or even trouble going to sleep at night. But there are many people with psoriatic disease who walk around with what we in the mental health field call subclinical depression. You may still go to that party and tell jokes, for example, but underneath that veneer of affability, you just feel blah.

A lot of people with psoriatic disease are ashamed to admit how they feel. After all, the condition isn’t cancer. But it still impacts their life in a major way. When I meet with patients, I tell them I realize how tough it is and

hold eye contact for a few seconds. The majority of them tear up and admit that yes, it can really suck sometimes. I then ask them what they used to do for fun before they were diagnosed with psoriatic disease. Oftentimes, they admit that they’ve given up on a whole lot of things they used to do. They no longer go out on weekend nights with friends, or coach their kids’ softball teams, or volunteer out in their communities. They may look OK on the outside, and even think that mentally, they feel OK, but once they’ve taken a quick internal inventory of what they’ve given up, they realize that yes, they are indeed depressed.

How to Get Help

General self-care can help a lot. People with psoriatic disease sometimes just give up. But the more time you spend alone, the more you can focus on symptoms like pain and itching, which will make you feel worse. I tell patients it’s so important to keep on your regular routine: Wake up, brush their teeth, take a morning shower, get dressed, drink their coffee, and then make sure that they have at least one thing to do that day. It may feel like climbing Mount Everest to get out of bed, but you need to. It’s also important to make sure that you have contact with other human beings each day. We underestimate how depressing isolation can be.

Exercise is also key, even if your body doesn’t feel like it. I tell my patients that activity begets activity, while lethargy begets lethargy. Any sort of rhythmic activity, whether it’s walking outside, going on the elliptical in your gym, or swimming, can help. Our bodies find rhythmic activities very soothing. If you really don’t feel strong enough, even some simple 30-second stretches and deep breathing can help.

If depression persists, seek out therapy. A particular type of talk therapy known as cognitive behavior therapy (CBT) has proven to work very well for people with psoriatic disease. This type of therapy helps people identify negative thoughts and patterns and helps them reframe them. A 2019 review published in the journal Psychology Research and Behavior Management, for example, looked at eight randomized controlled clinical trials and found that CBT not only relieved symptoms of anxiety and depression, but also physical symptoms of psoriatic disease as well. It makes sense, as CBT may help decrease some of the overall inflammation caused by the disease.

It’s also important not to give up on treatment. If your current regimen is not helping you manage your disease, talk to your doctor. There are so many safe, effective therapies out there now for psoriatic disease. Twenty years ago, we just said to patients, “I’m sorry” and stuck them in a UV light box. Now, we know there are medications to help us gain excellent control over the condition. Once psoriatic disease is under control, symptoms of depression and anxiety usually also improve, too. There’s no reason any person with psoriatic disease needs to suffer in silence in this day and age, either physically or mentally.

By Anne Babcock-Stiner, as told to Hallie Levine

I’ve had psoriatic disease for almost 5 years. I cycled through all sorts of medications, ranging from prescription topical ointments to immunosuppressants, until I found a biologic that brought me relief.

A Disturbing Diagnosis

In early 2018, I came down with strep throat. It was the first time I’d had this childhood disease in decades. Then, a few days later, I noticed a rash. They were small, round, scaly red spots that were all over my arms, legs, and chest. At first, I thought it was from the antibiotics, but then they started to itch.

I saw my dermatologist right away, who explained to me that I had a type of psoriasis known as guttate psoriasis. While most people think of psoriatic disease as large, red, shiny plaques, about 8% of people with psoriasis develop guttate psoriasis. It’s usually triggered by an infection, such as the flu or strep throat. It can also be made worse by stress.

My dermatologist prescribed cyclosporine, which is an immunosuppressant (it was originally given to people who had had organ transplants, to prevent their bodies from rejecting their new organ). It’s also used to treat severe psoriatic disease. I was a little nervous about taking it since it’s such a strong medication. It also seemed to cause an almost constant headache. It worked well — the spots vanished fairly quickly. I took it for about 16 weeks, which is the recommended treatment cycle. But when I went off it, within weeks my psoriasis had flared back up again.

An Unrelenting Search for Relief

I had gone off cyclosporine in late May. Over the next month, my psoriasis gradually returned. It seemed to be worsened by sweat and the heat. It was all over my body, but it was particularly bad in areas where there were creases, like my armpits, my groin, and the folds of my elbows and knees.

Finally, around July 4th I found some relief. I was at a barbecue at my sister’s house and was complaining about the constant itching. She darted inside and returned with a tub of prescription steroid cream that she told me to try. I took it, and after a couple of days, it seemed to help.

I went back to my dermatologist, who prescribed two steroid creams: betamethasone, for my legs, arms and torso, and triamcinolone, for more sensitive areas like my groin and armpits. They did help — the psoriasis never totally disappeared, but it was at least a relief from itching that kept me up at night and prevented me from getting work done. But my doctor wanted me to use it for only short periods of time — a week on, for example, and then a week off — and I couldn’t do it. Once I stopped, within a day or so the intense itching would return.

A Miracle Cure

This past February, I had a weekend where I just didn’t feel well. I had a persistent headache and just felt exhausted and out of sorts. After a couple of days, it went away, and I didn’t think anything more about it until a week later, when I got out of the shower and saw my torso covered in those same telltale small, round red spots.

I saw my dermatologist right away, who told me I was having another flare of my psoriatic disease. While my strep test was negative, she also ran antibody tests that revealed that I’d been exposed to the bacteria recently. While I’d been mainly asymptomatic, it was enough to trigger a resurgence of psoriatic disease.

This time, my psoriasis was everywhere. It didn’t just cover my torso and limbs; it was on the bottom of my feet and on my scalp. My dermatologist first put me on stronger prescription steroids, as well as something called a coal tar treatment. It took me 20 minutes in the morning and 20 minutes at night to put this ointment all over my body, but it didn’t work, and it stained all of my clothing.

After 2 weeks, I went back to her office to discuss options. I didn’t want to go back on immunosuppressant medication during a deadly pandemic. But I was so miserable, I didn’t know what else to do.

Thankfully, my dermatologist had some good news. She said to me, “The world has changed since the last time this happened to you, and it’s not just because of COVID-19.” Over the last few years, there’s been an increase in a new type of drug to treat psoriatic disease, known as biologics. Like cyclosporine, these drugs would target my overactive immune system, but unlike cyclosporine, they would only quiet the part of my immune response that was involved in my psoriasis. As my dermatologist said, “It only takes out all of the foot soldiers versus all of the generals.” This meant it had less risk of side effects, too.

She put me on a biologic drug that was approved in 2019 to treat moderate-to-severe psoriasis. The treatment involves two shots spaced a month apart in my dermatologist’s office, and then every 12 weeks afterward. The results were dramatic; it started helping within 5 days. Most of the plaque patches disappeared — including the persistent, itchy patches under my armpits and groin — except for spots on my shins. But those almost vanished after my second shot. The itching is completely gone.

It’s unclear how long I’ll need to be on biologics, but I’ll take them for as long as my dermatologist says I need to. It’s a relief not to have to worry about sweating, or heat, or any of the other environmental factors that would trigger unrelenting itching. I’ve had psoriatic disease for less than 5 years, and that was enough to make me see how debilitating it could be. I’m just relieved to get my life back.

Oct. 10, 2022 – When the time came for Ginny Erickson-Ebben’s elderly mother to move into a senior living facility in 2018, the entire family agreed the best place was near Erickson-Ebben. The weather was warm where she lived in Texas, and Erickson-Ebben lived just a mile down the road from the facility. She also had the time to help with her mother’s care. While happily and willingly taking on those duties, she didn’t realize what a big job she’d signed up for. 

Ebben did have physical help from a caretaker at the facility, but she was not authorized to manage medications – Erickson-Ebben’s mother took 20. Even for a bright, middle-aged woman like Erickson-Ebben, the medication management was a complicated task. 

“I was ignorant of how overwhelming the job would be,” Erickson-Ebben admits. “There was a nurse at the senior living facility who stopped in once a day to check on my mother, but otherwise the job fell to me, and it was stressful.”

Erickson-Ebben developed a system to keep everything straight. She made regular trips to the pharmacy to pick up the medications, and then, once a week, carefully counted out the meds and placed them in her mother’s pillboxes, separated by morning, afternoon, and evening doses. “It was scary at first, because I didn’t know what pill did what, but after a month, I learned them all and knew what I was doing,” she says. “But I was always worrying about what would happen if she missed a pill or if she took the wrong one at the wrong time.”

Like many seniors, Erickson-Ebben’s mother had a host of ailments and illnesses, and managing the prescriptions to keep them all in check is a huge undertaking. Recently, the American Medical Association took steps to help with the problem, issuing a new policy called “Reducing Polypharmacy as a Significant Contributor to Senior Morbidity.” 

Reducing Polypharmacy 

The doctor who championed the new policy is Louisville, KY-based Tom James III, MD. He’s been concerned for some time about the complicated picture of patients – especially seniors – taking multiple medications. 

“There’s an inverse relationship between the number of prescriptions a patient takes and their longevity,” he explains. “Of course, patients who are sicker are on more medications, but while all drugs are tested for their side effects, they’re not tested in combination.”

As a result, says James, every patient taking multiple medications becomes their own individual test site. Compounding the issue, he says, is the fact that in medical school, doctors receive training for adding medications, but not subtracting them. 

Another compounding issue is the fact that, like Erickson-Ebben’s mother, many senior patients have multiple doctors treating them at once. Today’s modern medicine means that, often, doctors don’t really have opportunities to discuss their mutual patients in person. 

“It used to be that we’d chat in the doctor’s lounge, often comparing notes on a patient,” says James. “Now we often put information into electronic charts, but don’t talk face-to-face.”

What’s sometimes lost, says James, is a chance for multiple doctors to be on the same page about a patient’s medications. “Medication profiles often don’t catch all the drug interactions,” says James, “because the tools we use are not discriminatory.”

This spills over into over-the-counter meds and supplements, too, which can sometimes interact with prescription drugs. All in all, many elderly patients are at risk for the complications of over-medication.

Erickson-Ebben found it essential that she and her family research the medications her mother was taking, and why. “You have to advocate for the patient,” she says. “Unfortunately, if there’s a reaction to a medication, you need to research that, too.”

In the case of Erickson-Ebben’s mother and her 20 medications, if one caused a rash, it was difficult to know which. “You can’t just take them off one medication,” she points out. “Talk to the doctors about your concerns, and don’t let them be dismissive of patients just because they’re elderly.”

Creating a Safety Net 

The new AMA policy aims to create a network of caretakers to educate patients about the significant effects of all medications, as well as many supplements. It encourages pharmacists, doctors, and other caretakers to teach patients to bring lists of all updated medications/supplements to each point of care. 

The idea is to “get patients thinking in terms of becoming the victim of too many medications,” James says. “Ask questions when you need answers.”

Many doctors have limited time with patients these days, so advocacy is crucial. “If there’s an adult child or home-health nurse in the picture, they should review the medication list at least twice a year with the patient’s primary care physician,” says James. “Too often, if a doctor didn’t write a prescription on the list, he or she won’t mess with it. So we hope a pharmacist might catch the potential interaction.”

Erickson-Ebben’s family specifically chose to work with one hospital system, hoping there would be good coordination between doctors. But that didn’t happen. “The doctors didn’t always communicate well with each other,” says Erickson-Ebben. ”We found that each specialist was focused on their specialty only.” 

This is part of the current gap in care, one that James hopes to begin resolving with the new AMA policy. In the end, he says, the current system relies too much on the “I hope this will work,” approach. “We need to go beyond the resolution and add in an educational approach, too.”

The new AMA policy is a good first step on the road to improving health care for seniors, and James hopes to keep moving the needle. “There’s universal agreement that there’s a problem,” he says. “There’s not yet a universal agreement on the approach.”

By Jonathan Chan, MD, as told to Hallie Levine

Confused about the difference between ankylosing spondylitis, axial spondyloarthritis, and non-radiographic axial spondyloarthritis? With so many similar-sounding terms, it can be hard to know what’s what. WebMD reached out to rheumatologist Jonathan Chan, MD, for answers to some of your most pressing questions. Here’s what you need to know.

What Is Non-Radiographic Axial Spondyloarthritis?

It’s a type of inflammatory arthritis known as axial spondyloarthritis that affects your spine and the sacroiliac joints. These are the joints that connect your lower spine to your pelvis. It causes pain in your lower back, hips, and butt. There are two classes of axSpA: non-radiographic axial spondyloarthritis (nr-axSpA) and ankylosing spondylitis (AS). If you have the former, it means that doctors can’t see any damage to your joints on an X-ray. But once they start to see them, your condition has become AS.

It’s more common than many of us realize. Up to 6% of people with chronic back pain will ultimately receive a diagnosis of nr-axSpA. The earlier you’re diagnosed, the better your prognosis, and the less likely you are to progress to AS.

What Causes nr-axSpA?

We don’t know for sure, but family history seems to play a big role. You’re more at risk if a first-degree relative, like a parent or sibling, already has the disease. While there are around 30 genes related to its development, one in particular — human leukocyte antigen, HLA-B27 — seems to especially increase your risk. Age may also play a role, since symptoms usually start in your 20s. Smoking is a risk factor, too. But unfortunately, I still have plenty of patients who have never smoked, eat right and exercise, and still go on to develop nr-axSpA.

Will My nr-axSpA Turn Into Ankylosing Spondylitis?

That’s hard to say. It’s actually controversial as to whether or not they’re even the same disease. We do know that some people with nr-axSpA will go on to develop ankylosing spondylitis. A 2018 study found that about 5% of patients do so after 5 years, and almost 20% do after 10 years. There do seem to be some risk factors for progression, like having the HLA-B27 gene, or blood tests that show elevated levels of c-reactive protein, a substance that indicates inflammation. But honestly, from a treatment perspective, there’s no difference. All the therapies that we’d use for ankylosing spondylitis work on nr-axSpA, and vice versa. The key is to get an early diagnosis. It can often take more than 10 years.

What Are the Symptoms of nr-axSpA and Why Can It Sometimes Be Missed?

The majority of the time, it’s low back, buttock, and hip pain. But it’s different than traditional back pain. It doesn’t come on suddenly, but happens slowly, over weeks to months to even years. It improves with activity, not with rest, and may be intense enough to wake you up at night. You may also notice morning stiffness that takes a while to go away. About 40% of the time, patients develop other inflammatory diseases, such as uveitis or inflammatory bowel disease.

The problem is that back pain is a common complaint among patients, and the average primary care physician may not realize it could be due to inflammatory arthritis. But I would say if you develop chronic lower back pain before age 45, or already have an inflammatory disease, you should ask your doctor for a referral to a rheumatologist.

How Is nr-axSpA Diagnosed?

There are three things your doctor will need to make a diagnosis:

• An x-ray of the SI joint
• A blood test to check for the HLA-B27 gene
• An MRI of the area

If an X-ray shows no joint damage, but an MRI shows active inflammation, then you most likely have a diagnosis of nr-axSpA. If the X-ray does show damage, then you will be diagnosed with ankylosing spondylitis.

How Is nr-axSpA Treated?

There are three broad categories that include:

Physical therapy and exercise. It’s best to start as soon as possible after diagnosis. It’s very important to do core exercises to take pressure off of your back, along with cardiovascular exercise and strength training. It’s a good idea to see a physical therapist, even if you already work out regularly, to make sure you’re exercising correctly and in a way that won’t cause more joint damage. Since nr-axSpA can cause your spine to “freeze,” posture training is also important.

Nonsteroidal anti-inflammatory drugs (NSAIDs). Prescription medications such as celecoxib (Celebrix) can help control pain and stiffness, but these usually only work in the very early stages. By the time most patients come to see me, they’re not enough.

Biologics. These are a class of drugs that have really revolutionized the treatment of inflammatory arthritis. They work by blocking proteins that cause inflammation. We usually start with a group of medicines known as anti-tumor necrosis factor agents (anti-TNF agents or TNF inhibitors) like infliximab, etanercept or adalimumab. But if patients don’t respond to these drugs, or can’t tolerate them, we try another form of biologics known as anti-interleukin 17 therapy, such as secukinumab (Cosentyx) and ixekizumab (Taltz). Thanks to all of these options, many patients with nr-axSpA are able to manage symptoms and stop the disease from progressing.

By Charis Hill, as told to Susan Bernstein

I was diagnosed with axial spondyloarthritis in 2013 at the age of 26. I had symptoms, though, as young as age 13 and probably earlier than that. Getting a diagnosis takes something like 8-12 years for women and even longer for Black women. I was socialized as a girl, so I was diagnosed as a woman, but now, I identify as non-binary. I call myself “professionally disabled,” and I am proud of being disabled. It’s an identity.

I have a lot of low back pain, as well as hip pain at the joints, and my symptoms flare up frequently. I also have pain in the joints of my neck, and my spine is already showing some damage. I have a lot of pain in my peripheral joints also, including my shoulders and hands. I also have significant fatigue. These symptoms affect my sleep and cognitive function. Especially because of my work as a writer, these symptoms have affected my vocabulary.

Look for Ways to Keep Moving

I was a college athlete: I played soccer and I was a marathoner. I defined my life around being active. I still have that athlete’s brain, that desire to push through the pain, but exercise can be the worst thing for me sometimes, and the exact opposite of what it should be doing for me. I actually can harm myself if I overdo it. So I bought a house last year, and my favorite part of that is that I now have a backyard. I planted a vegetable garden, which has been great, especially during COVID. I didn’t want to buy so much produce at the store. I guess I thought that the virus could be on the fruits or vegetables or people touching them. I feel more comfortable growing my own produce, and it’s fresher and organic. I am working on landscape gardening too.

I grew up in North Carolina with most of my fruits and vegetables grown in our back yard. Gardening was one of my most positive childhood memories. It’s enjoyable to garden: I can interact with the birds and the stray cats in my neighborhood and spend time in the fresh air. If I’m planting something and digging in the soil, and I pull out an earthworm, I know my soil is healthy. With gardening, there’s a reward associated with the activity: I’m growing things that are healthier for me. All the health rewards are there in this one activity.

With my landscaping, I’m creating a beautiful area outside of my home, so I can look out of my windows and see green, beautiful sights. At first, it was a blank slate. The California sun sort of killed all the weeds this summer. Instead of trying to dig it all up, I covered the ground with cardboard to suffocate the bad seeds, then I cut holes in the cardboard to plant what I want where I want it. I’m working on creating a drought-tolerant landscape: I’ve planted roses and propagated my own from cuttings. I’ve also planted lavender and daisies. I grew some vegetables that I can’t eat because they’re nightshades, such as tomatoes, peppers, eggplant, and zucchini, but I give these to my neighbors. I also have planted a winter garden of peas, carrots, and kale.

Find Your Passion

My advice to other people with axial spondyloarthritis is to do something that you’re already passionate about doing. The reward will be there for you. There’s no point trying to do some type of physical activity that you hate. You won’t stick with it. If you want to garden, start with one plant and get to know it. I started my first garden indoors when I lived in an apartment. It doesn’t have to be something you’ll eat in the end, but something you enjoy seeing at the end of each day. Whether you choose to garden or do something else, perhaps it’s not an intentional exercise, but an activity that you build into your daily life. Gardening is something I already wanted to do. I walk into my yard several times a day. By gardening, I’m active, I’m moving my joints, and I’m stretching every time I do that. It’s not always about doing something for 30 minutes several times a week. This doesn’t feel like a chore to me. I may check on my roses, give them some water. It’s enjoyable and I’m not even thinking about the exercise aspect of it.

It’s important for people to understand that everyone has different expectations and levels of physical ability with axial spondyloarthritis. Some people will be able to run marathons. I do gardening. It’s what I can handle, and my body feels good doing this.

Oct. 11, 2022 – During the early days of the pandemic, Alivia Gustman, then just 8 years old, was in a class tasked with the goal of starting a business.

For Gustman, this wasn’t the time to pitch a bake sale. Instead, having recently watched her mom go through breast cancer treatment, an idea immediately popped into her mind: Why not sell teddy bears to raise money to help kids with cancer — or to anyone whose loved ones are in treatment?

After doing a virtual pitch to her Boca Raton, FL, teacher and classmates, the idea broadened when her dad jumped on board and helped build a website and secure a trademark.

The result: A family-run project and the launch of Cancer Bears, a nonprofit that has already sold more than 1,000 bears in over 30 states and abroad.

Best of all: Thanks to all of these bears being sent across the country (and globe), Cancer Bears has raised $30,000 to date and donated those funds to cancer centers across the country. In fact, since they started the organization, they’ve set up donation partnerships with Boca Raton Regional Hospital, Joe DiMaggio Children’s Hospital, and NYU Langone Perlmutter Cancer Center – all locations that played a role in helping Alivia’s mom – and formed an alliance with Keaton’s Child Care Alliance, a nonprofit that provides support services to families facing a pediatric cancer diagnosis.

So how did a then-third grader make all of this happen?

“Knowing that my mom would be OK motivated me,” says Gustman, now a very busy fifth grader who turns 10 on Oct. 16. “I wanted anybody going through treatment to be able to hold onto something. I thought a bear would be the perfect thing to cuddle with.” 

For Tara Gustman, Alivia’s mom, helping others is in the family DNA.

“This was such a simple act of kindness that happened during virtual school and right when I was getting back on my feet again,” says Tara, who was diagnosed with stage II breast cancer in December 2018 and went through a double mastectomy, the removal of 12 lymph nodes, 16 rounds of chemo, and 7 weeks of radiation. She’s now been in remission for 4 years.

“The feedback that we get from everybody is remarkable. We can’t wait to continue to make a difference to those in need.”

And, while Alivia admits that she’s busy with schoolwork– it’s all about time management, she says – there’s nothing better than seeing all of the bears lined up and ready to be shipped out of her (and her grandparents’) garage.

Recently, Alivia and her sister, Savannah, 8, have gotten very busy attaching ribbons to each bear before it’s shipped.

“You can request the ribbon for the person’s cancer – so teal for ovarian, yellow for childhood cancer, and pink for breast cancer,” she says. “My sister is really good at organizing the ribbons.”

Ultimately, this is one family that’s laser-focused on helping others.

“Every 2 minutes, someone is diagnosed with breast cancer in the U.S. and, while that is unfortunate, what we’re doing keeps our entire family motivated,” says Tara. “We’ve become a resource of encouragement in the form of bears and conversation with people in our community. Happily, Alivia’s story keeps getting shared, and the more people know about us, the more we can help others.” 

Ask Alivia and she’ll tell you that being a kid should never be a barrier to rolling up your sleeves.

“Personally, I’d tell other kids to follow their dreams,” she says. “If something motivates you to help others – do it.”