Author: books

By Jasvinder Singh, MD, as told to Sonya Collins

What attracts me to research into psoriatic arthritis and other rheumatic diseases is that the discoveries we make can improve function and quality of life for people. It can give them the opportunity to once again enjoy life fully, spend time with their loved ones, and do the other things that bring them pleasure.

I’m a professor of medicine and epidemiology at the University of Alabama at Birmingham, a physician at the Birmingham Veterans Affairs Medical Center, and I co-authored the guidelines for the treatment of psoriatic arthritis.

A Revolution in Treatment Options

Psoriatic arthritis is almost undergoing a revolution in terms of the treatments that are available.

Much of the current research is focused on targeted therapies. That’s where the field is going. In the last 5 to 10 years, we’ve gone from traditional disease-modifying drugs to very specific treatments that target specific drivers of psoriatic arthritis.

We have medications that have been around for a long time that can inhibit many cells that are active in psoriatic arthritis. We also have these newer targeted drugs that stop just one of these molecules, rather than all of them.

The advantage of the older medications is that we have experience with them and a lot of long-term data about their safety.  The advantage of the new therapies, on the other hand, is that they’re more effective over time.

It’s possible, down the road, that we’ll find that the side effects of targeted drugs are more predictable than those of the older medications. Their side effects may also be more tolerable to people.

Most of the targeted drugs are given by injection just under the skin. Some of the most common side effects of medications, not just for psoriatic arthritis but in general, are  headaches and gastrointestinal issues like nausea. Since targeted drugs don’t go through the digestive system, the side effects may be milder.

The more targeted approach may upset the balance of the body a little less than those other drugs do. We don’t know that for sure, though.

Several targeted drugs are already approved and available for patients to use. This has really expanded the horizon for doctors and their patients to choose treatments that may control the disease better.

Predicting a Response to Treatment

Another important discovery that’s emerged in the last 10 years is that certain factors affect whether the drugs work or fail. Many sophisticated studies have shown that both smoking and obesity reduce the effectiveness of these drugs and how long their effects last.

So there are things patients can do on their own, in combination with their medications, to better manage their disease.

But it’s still hard to predict who’ll respond to which medication.

Psoriatic arthritis is not a single type of disease. For the longest time, we’ve described it as five different types. Beyond that, there may be different drivers of the disease at play in any given patient. We don’t have specific tests to see what those are and which drug would work best. For now, we choose medications based on the potential benefits and risks and what the patient prefers.

More importantly, across the life span of a patient, those drivers of the disease might change. It’s possible that a couple of them are active and that we can suppress them for a while with the available drugs. Then, the patient ages, develops other illnesses, and something else begins to drive the disease.

So it’s hard to predict who’ll respond to which medication. That response can also change over time. But the more we use these newer drugs, the more we’ll learn about them.

A Well-Stocked Toolbox

If someone’s response to a medication does change, we switch them to another drug if we can. That’s why we want to keep lots of medication choices in our toolbox. This is a lifelong condition, and we want to have options available for when we need them. And I think we’re in a very good place for that right now. 

Having said that, I’m happy to see strong and ongoing interest from drug companies in developing new products and additional targeted therapies, not just for psoriatic arthritis but for many autoimmune diseases.

This is only possible with clinical trials. I always encourage patients to consider participating in them. That’s how we learn and discover new therapies. There’s the potential — if the trial drug is safe and effective — that it benefits patients in the trial themselves.

We can’t promise that. But the benefit to other patients in the future, if the drug gets developed and approved, is immense. Because then the drug will be available to everybody.

By Daniel Rose, as told to Evan Starkman

I got diagnosed with psoriatic arthritis almost 7 years ago, when I was 24. I was having back pain and stiffness in the morning, which was a nuisance. And I was getting really bad swelling in my feet and toes, which made it painful to walk sometimes. That was major. I had to plan my day around it. I also had to stop jogging and running, which was a bummer.

When I was around 28 or 29, fatigue began to kick in. I didn’t feel tired or sleepy. It felt more like my whole body wasn’t working properly. It was very hard to get out of bed and do chores. Even bathing could be hard. It interfered with a lot of my day-to-day activities, including work.

Sometimes I had to push through the pain and fatigue, even though I knew that I’d pay the price at some point later on. There were days when I’d be in a lot of pain and wouldn’t say a word. I learned how to hide it.

Some people who knew about my psoriatic arthritis didn’t understand how debilitating it can be. You can’t see arthritis, so it’s a bit of an invisible condition, especially if you don’t have psoriasis symptoms in noticeable areas. So people would tell me, “Hey, you look fine. Just go get some sleep.” And I’d be like, “I wish it was that easy. I don’t feel that great. It hurts.”

Or somebody would say, “But you look so young.” Or “Try yoga.” And I’m like, “I’ve tried it all. It’s just not a simple thing. It’s very complicated.”

The Road to Remission

My rheumatologist had me try quite a few medications, and it took a while to find ones that worked for me. I started with a JAK inhibitor in pill form. Then I moved on to biologic injections. I tried about four of them.

My skin improved tremendously, and my psoriasis has been clear for almost 2 years now. But the arthritis component was the hardest part to resolve. I was terribly afraid not only of joint damage, but also not having any kind of relief. It was truly terrifying.

It was also isolating, in the sense of not knowing people who could relate. Most people my age don’t know about copays and infusions and what a rheumatologist is, bloodwork, and navigating the insurance aspect and learning about medications. It’s overwhelming.

But eventually the treatments started to help. I got into remission on and off. And in late 2021, I started getting a biologic infusion that made a huge difference, once my rheumatologist adjusted the dosage. I began to have less joint pain, and my fatigue lifted, too. This is probably the longest I’ve been in remission.

I honestly feel like my old self again. I still need to take it easy some days. But I feel like I have the energy and the freedom to do things that I wouldn’t have been able to do before. I anticipate traveling a lot more. I’m also able to work more hours, so I can put more money in my pocket.

It took a while, but I’m really happy that I found the right treatment plan for me.

Strategies That Helped Me

Everybody’s different. But there a few things I’d recommend to someone who’s newly diagnosed with psoriatic arthritis.

First would be to find support. It’s so important to find people who can relate to what you’re going through. It’s a little bit harder to get support in person, partly because of COVID. But there are many support groups you can join online. You may like one more than another, so try a few.

Learn as much as you can about psoriatic arthritis, too. I did a lot of research to understand what was going on with my body, how to explain psoriatic arthritis to people in my life, and ways to speak up to my rheumatologist about my symptoms.

Make notes on how you’re feeling day to day. I keep a record in a little planner book. I write down my symptoms and the date, my pain levels, and what I did that day. That way I can show my rheumatologist and ask, “Hey, is this a pattern?”

It gives you a better handle visually of what’s going on. And it’s a tremendous resource for a rheumatologist to better understand how you’re doing. I’ve also noticed that doctors seem to take you a bit more seriously when you take the time to write things down, including questions for your checkups.

Steps like these can improve your odds of getting the help you need.

By Brenda Kong, as told to Shishira Sreenivas

I developed psoriasis and psoriatic arthritis (PsA) at the same time when I was 12 years old. I’m 41 now. My psoriasis diagnosis was easy, but the PsA diagnosis was not. Because I played sports as a teenager, doctors attributed my aches and pains to that. Unfortunately, I wasn’t fully diagnosed until I was 21.

By then, we couldn’t turn back time on all the joint mutilation I already had. For example, something that had bothered me since I was 12 was my middle finger joint on my left hand. I said, “Hey, this is really bad. It shouldn’t be this swollen for this long.” But I kept being told, “You’re playing too much sports,” and “If you rest it and ice it, It’ll be fine.”

It’s not fine. It became my first mutilated joint. Now I literally have full-body arthritis, from my jawline all the way down to my toes.

The Hardest Time

My late teens into my early 20s was the hardest time for me. When I was a college student, 18 years old, I tried out for the school’s volleyball team. But because of my pain, I never got to play. The stress I had after starting college was horrible. It all just went from 0 to 60. And the nature of PsA is that it responds to stress.

Most of my joint damage happened when I was between the ages of 18 and 20. At times, I couldn’t get out of bed. I couldn’t go downstairs without gripping the handrails. I wanted to go clubbing, wear heels, and all of that. I didn’t get to do that.

When I was around 21, both my psoriasis and PsA flared up and I was bedridden for 2 months. I had to use a wheelchair or cane to move. I went in and out of the hospital around three times in 3 weeks because we couldn’t regulate my body temperature. The inflammation was everywhere. I couldn’t even make a fist.

At the time, I very much hated my life. I’d never even heard of a rheumatologist until finally, a dermatologist who was treating my psoriasis urged me to see one.

Find the Right Rheumatologist

I think my biggest regret was not getting to a rheumatologist sooner. I could have taken care of a lot of the joint pain that later on became damage.

In fact, my advice for anyone else going through this would be to see a rheumatologist — not just any doctor — as soon as you can. Also, be consistent about seeing your doctor. 

I actually went through three rheumatologists before I found one that really clicked. The first one, who diagnosed me, I just didn’t like very much. The second one didn’t take my insurance. But the third one, I loved. He was my rheumatologist up until I lost my insurance a few years ago and had to switch.

The first thing that rheumatologist prescribed for me was a steroid. It was a very strong steroid.

The first time I took it, I fell asleep on the couch because I was so tired. When I woke up, I sat up on the couch, then put my legs down and stood up. I didn’t even register how easy it was. The drugs had reduced my inflammation that much. I didn’t take deep breaths and brace myself as I usually did. I thought, “Oh my God! What just happened?”  

But my biggest improvement didn’t come until a year and a half later, when my doctor started me on biologics.

Try Different Treatment Options

The first time took a biologic for PsA, I was around 24. I’d just bounce out of bed. I was like, “What are we doing?” “Where are going?” I just wanted to go do something, because I was able to. My friends and I went traveling. We went to Las Vegas six times in one year just to do it. My skin was good and my joints were amazing.

This was my first biologic for the arthritis, but my third overall. I’d tried others for my skin only and my joints only. But this worked for both. I went from being covered in psoriasis, barely able to walk, using a wheelchair, and taking 1,800 milligrams of ibuprofen daily to not needing painkillers at all.

I’ve used a number of biologics since. Funny enough, I’m now using that first biologic I took for my psoriatic arthritis. I got back on it 3 years ago when my arthritis was getting pretty bad again.

I’ve also tried complementary treatments like yoga and meditation in addition to the biologic. Also things like diet — losing weight just gave me a lot less to carry around.

Even on a biologic, you can have a flare-up. And there’s always a fear that your treatment will stop helping you. That does happen with biologics. After a certain point, it may lose efficacy and you have to figure out a new treatment.

If this biologic ever stops working for me, I would take the steps to try to find another one. I know how bad my body can be and how painful it can be without medication.

Manage Your Stress

Stress is a major contributor to PsA. So mental health is a big thing for me. Now when I have a flare-up, I actually relax a lot more. I know that if I stress out about it, it’s going to be worse for me.

I do mental health exercises now. This helps keep me from overthinking, going down rabbit holes, and stressing myself out like I’ve done before.

When I was in my early 30s, I told myself that I couldn’t keep doing that. So I started therapy and made managing stress part of my routine. I started doing calming meditation exercises. I started doing yoga. Even now, when I feel really stiff, I sit and do some light yoga poses until I can function a little bit more.

It’s impossible to be stress-free. But now I do things to help manage it, and I have a much better mental outlook.

Try Activities That Make You Happy

In my early 20s, I couldn’t cook because my hands hurt so much. Now I can. I do hand exercises to keep my hands loose and happy.

I cook massive amounts of food when I need to feel better. I just get in the kitchen, I turn on music, and I don’t talk to anyone. No one talks to me. Everyone in my house knows this. I stay in the kitchen and get all my frustrations out, and it always turns out beautifully. I redirect so much of my emotion and stress into cooking.

The psoriatic arthritis life is a roller coaster, for sure. There are going to be many highs and there are going to be many lows, unfortunately. You just have to focus on the highs, and you’ll get through the lows.

By Delamo Bekele, MBBS, as told to Alexandra Benisek

With psoriatic arthritis, each person’s symptoms and situation are unique. Your rheumatologist will work with you to find a treatment plan that’s tailored to you specifically, rather than a “one-size-fits-all” approach.

Before starting treatment for psoriatic arthritis, doctors do a full evaluation of each patient. We look to see if they have joint involvement, spine involvement, nail or skin disease, and more. Once that’s done, we come up with a medication regimen as well as nondrug ways to target your specific symptoms.

Usually, we start with nonsteroidal anti-inflammatory drugs (NSAIDs) or other anti-inflammatory medications. Then, there’s usually some form of immunosuppressive medication — drugs that keep an overactive immune system in check. Finally, we explore treatments like exercise, physical therapy, and weight loss, if needed.

Patient education is also important. Part of that is learning what the goal of treatment is, which is remission, meaning your disease is not active and you have no symptoms.

What Treatments Are Available?

There are several excellent treatments out there. The most powerful are the biologic medications, which include TNF inhibitors as well as other types. There’s also oral medication such as methotrexate, one of the standard medications for psoriatic arthritis.

Some people are interested in trying other joint-protective medications that haven’t been scientifically proven yet. We can use these in addition to their main medication to control inflammation, but not as the only therapy.

Then there are interleukin-17 (IL-17A) inhibitors; treatments for refractory psoriatic arthritis; and JAK inhibitors, which are oral medications. Newer drugs are also being explored.

Sometimes, patients need additional pain medication. But we try to stay away from opiates. We may prescribe things like duloxetine or tramadol.

How Can You Maximize the Effectiveness of Your Treatment?

What you need to do to make the most of your treatment depends partly on your particular treatment plan. But some basics include:

Keep your doctor updated. Most psoriatic arthritis treatments, other than anti-inflammatory medications, suppress your immune system and can also affect different organs. Let your doctor know any time you start any new medications to make sure there’s no interaction.

Also, limit the use of supplements, other drugs, and even alcohol. With certain medications, like methotrexate, you should avoid them completely.

Stay on top of vaccinations. And with COVID-19, try to reduce your risk of exposure. Get vaccinated against specific infections, such as flu and pneumonia, if you’re taking a medication that affects your immune system.

Quit smoking. This may not only help your medications work better, but will also improve your cardiovascular health in general.

Weight reduction. If you’re overweight, this is very important. That’s not just because it  decreases the load on your joints. Excess weight can also mean you don’t respond as well to medication. Losing weight reduces your risk of complications from psoriatic arthritis, too.

Your exercise plan should focus on weight loss and strengthening muscles, including your core. We recommend low-impact cardio exercises like walking, cycling, elliptical machines, and pool exercise, especially if you have serious hip, back, or foot pain. Avoid higher-impact activities like running on a treadmill at high speeds or running outdoors. These sometimes make symptoms worse.

Stick to your treatment plan. To get the full benefits, carefully follow your doctor’s instructions for your medications. Several studies have shown that if patients don’t do this, they don’t respond well to treatment. And usually, if you don’t respond to treatment at first, it’s harder to get your symptoms under control over time.

Keep track of your symptoms. See your doctor regularly, not just a few times a year. Also, assess how you feel every time you check your pain, compared to when your symptoms were at their best.

Ask yourself:

• Am I stiff in the morning?
• Am I waking up at night with pain?
• Am I getting pain in areas that didn’t hurt in the past?

Your answers are signs of whether your treatments are working. If you notice a change, don’t wait until your next appointment. Tell your doctor as soon as possible.

Why Some Treatments May Not Work for You

Treatment is different for each person for lots of reasons. It depends first on what you’ve tried before and how serious your psoriatic arthritis is.

For example, one person’s psoriatic arthritis may only involve their left wrist and one finger on their right hand. They might need only a little bit of methotrexate to get it under control. They may go into remission over time and then stop medication altogether.

But another person may have psoriatic arthritis that affects most of the joints in their body. They could go through 10 different medications before finding one that’s effective. We can’t do tests to predict which medication will work for a specific patient.

Because of this, it’s important to understand how these medications work and how long it may take for them to work, and to then have follow-ups with your prescribing rheumatologist.

For example, we don’t want to try a medication for a year to see if there are benefits, then try to change your treatment plan. Instead, we want to keep adding medications or making subtle changes until you get to the point where your symptoms are inactive or under control.

If you try a couple of treatments and don’t see a response, you’ll work with your rheumatologist and other doctors to find a more comprehensive plan that’s effective.

You may try combination therapy, which means taking more than one medicine at a time. Your doctor might do this if you have very active psoriatic arthritis. But we have to be careful with this approach. Some medications can’t be combined because of the risk of infection. We don’t usually combine two different biologic medications.

It’s also important to consider each patient’s preferences. You have to inject yourself with some of the medications, so people with needle phobias won’t prefer those. If this method isn’t doable, there are a couple of medications you get by infusion (through an IV).

Or a patient may have a busy work schedule, and they’re not able to go in for an infusion every couple of weeks. Pills may be better for them.

That’s the whole point of tailoring treatment. We have choices, not just based on the science, but also based on what’s practical and preferable for each patient.