From creakyjoints.org
Frequent flare-ups, fatigue, or difficulty with daily tasks might signal a medication change. Learn how to talk to your doctor about these signs for improved care
Living with psoriatic arthritis (PsA) can sometimes feel tough, but remember, you’re not alone. PsA is a condition that can affect both your joints and your skin in different ways. Your doctor will help you come up with a plan to manage your symptoms and prevent any long-term damage to your joints and tendons. While there isn’t a cure right now, your treatment plan is very important in helping you lead a healthy and active life.
However, sometimes your treatment might not work as well as you hoped. Maybe your symptoms don’t go away, or new ones appear. This can be really frustrating. A 2021 study found that almost half of people with PsA stopped their treatment at some point, often because they felt it wasn’t working.
If you’re unsure if your medicine is working, it’s a good idea to talk to your doctor. There are many different ways to treat PsA, and what works best can be different for each person. It may take some trial and error — and patience — to find the right one for you.
Just ask Ashley Krivohlavek. She’s been living with PsA for nine years and has switched medicines at least seven times. How does she know when to change? Her body tells her. “When my symptoms get worse, I know it’s time for something different,” she says. Ashley recently wrote a paper for the American College of Rheumatology on how to work with your doctor when your treatment isn’t doing the trick.
Communicating with Your Care Team
Remember, your doctors can’t know your treatment isn’t working unless you tell them. Are you feeling better? Is your swelling, stiffness, or joint pain lessening? Or, are there new symptoms? These are important things your doctor needs to know. Talking with your doctor and making decisions together is a key part of getting the right care. Good communication is important because PsA treatment is different for everyone. Everyone needs a personal treatment plan that is right for them.
Patience is also a very important part of evaluating the effectiveness of your treatment. Symptoms do not tell the whole story, says Joel Gelfand, MD, MSCE, FAAD, a dermatologist and Professor of Dermatology and Epidemiology at Penn Medicine in Philadelphia.
He explains that sometimes, even when swelling and inflammation get better, pain can increase. This could be because you’re doing more activities and putting more pressure on your body, or it could mean you have other health conditions like fibromyalgia or osteoarthritis.
Sometimes, if your pain increases, it doesn’t necessarily mean your medicine isn’t working. Dr. Gelfand explains that doctors might need to do more tests, like blood work or scans, to see if your treatment is working. He says, “patient experience is critical, but marry it with a good clinical examination.”
Also, Dr. Gelfand says that it’s good to remember it could take up to six months for PsA medicines to work. While skin issues can get better in as little as two to four weeks, it might take up to 24 weeks or even longer for your joints to start feeling better. You might have tried your treatment for enough time and it’s not helping, or maybe your treatment was working for a while but now it’s not. Either way, you have three choices: you can try a higher dose, add a new medicine, or switch to a different medicine.
New treatments for PsA are being developed as researchers learn more about the disease. These new treatments are very personalized and targeted. This makes it even more important to keep your medical team updated on how well your treatment is working. They can help you figure out if one of these new treatments could be a good fit for you.
Understanding Symptoms
Psoriatic Arthritis (PsA) is a complex disease. Its symptoms can vary a lot from person to person, and they can affect both the inside and outside of your body. The National Institute of Arthritis and Musculoskeletal and Skin Diseases lists some of these symptoms:
- Flaky skin patches, mostly on the scalp, elbows, or knees
- Stiff, swollen, or painful joints
- Feeling tired
- Pain where ligaments connect to bones, especially in the foot
- Swollen fingers or toes, also known as dactylitis
- Changes in your nails, like pitting, crumbling, or separating from the nail bed
- Inflammation in your eyes, or uveitis
- Inflammatory bowel disease
But PsA doesn’t just affect you physically. It can also impact your social and emotional life, and doctors might not always ask about these parts of your life. In a 2022 study published in the Journal of Clinical Medicine, researchers found that PsA could seriously affect the quality of life. In fact, 40 percent of the people in the study had stress-related problems, like trouble focusing, feeling frustrated, and being overwhelmed. It’s really important to tell your doctor about all your symptoms, even the ones they can’t see.
When you are first diagnosed with PsA, your health care team will work with you to create a treatment plan. The goal of this plan is to lower your symptoms or even make them go away. This is called a “treat-to-target” approach. The medicines you take might start working in a few weeks or months, depending on what they are. After this, you’ll need to check if your treatment plan is working. But how do you do that?
If you’re someone who waits for your doctor to ask questions before talking about your symptoms, it might be better to take a more active role. Work with your doctor to keep track of how you’re doing with your medicine, and tell them about any changes you notice.
Johns Hopkins Medicine suggests four steps to help you get the most out of your doctor visits:
- Set an agenda
- Be honest
- Ask questions
- Work together
Talking to Your Doctor About Psoriatic Arthritis Treatment
Let’s look at some clues that your treatment might not be working, and how you can talk to your doctor about them.
1. You have increased flare-ups.
If your flare-ups are happening more often or getting worse, it could be a sign that your medicine isn’t working. Flare-ups can mean that inflammation in your joints isn’t being controlled, which could cause lasting damage to your joints. Flare-ups can include joint pain and swelling, more psoriasis skin patches, and feeling tired or foggy.
A flare-up is when these symptoms happen in a strong, acute way, but the symptoms can be different for different people. Dr. Gelfand says that if your medicine isn’t working, your symptoms would slowly get worse, not suddenly.
What to tell your doctor
Try keeping a daily journal of your pain level and where it is. Write down all your symptoms, including any new ones and ones you might not think are related. Also note any symptoms that seem to be getting worse. Show your doctor this information so they can look it over. To start the conversation, you might ask your doctor, “What can we do if my flare-ups are getting worse and happening more often?”
To prepare for your doctor visit, Krivohlavek recommends having ready a list of all your symptoms and symptom changes. “It’s hard to remember all the things you need to tell your doctor because you have brain fog. One of the many things I tell people to do is to keep ongoing lists as things come up. Put it in your phone or write it down. Leave paper on your nightstand, in your kitchen, just keep it handy. Write your symptoms down immediately because it’s so easy to forget.” She likes to keep a log for two weeks prior to her appointments.
2. You have reduced mobility.
If your inflammation goes unchecked, you can lose strength and balance over time. You may find that you are not able to accomplish your daily routines or exercise. You may experience the following life-impacting symptoms:
- Back pain along the sacroiliac joints that may slow you down
- Increased morning stiffness and pain
- Reduced range of motion because of lost joint mobility
- Enthesitis (tendon and ligament pain) at Achilles tendon, bottom of feet or elbows
What to tell your doctor
Pain and trouble moving can vary a lot from person to person, so it’s helpful to give your doctor a specific list of how your daily activities are affected. Think about your daily routine and note which tasks are getting harder, or which activities you can’t do anymore. A good question to ask your doctor could be, “How can I do more when my PsA is making me feel more limited?”
3. You’re feeling more tired.
Fatigue is a big, disabling part of PsA. According to a 2021 study, poor sleep, genetics, metabolic disturbances and other biological and physiological factors contribute to fatigue in psoriatic arthritis. There is also a relationship between fatigue and the psychosocial issues caused by the disease. When you are feeling stressed or overwhelmed, it can make you more tired. Fatigue does not usually present itself alone, but comes in conjunction with inflammation and is often the result of the stimulation of the immune system, according to Dr. Gelfand.
“For me it’s one hundred percent about fatigue,” says Krivohlavek. “Fatigue is off the charts when I flare.”
If you are increasingly tired, this is not a symptom to ignore. It can be the “canary in the coalmine” — a warning that there are serious underlying reasons for it. A 2019 study published in the Journal of Rheumatology found that fatigue was driven by inflammation, disease duration, joint tenderness/swelling and chronic pain — signs that your medication may not be working.
Fatigue, or feeling more tired than usual, can be a tricky symptom to talk about. It isn’t something you can see or measure easily, but it’s important to tell your doctor about it. Why? Because it could help your doctor figure out if your medication isn’t working as well as it should.
What to tell your doctor
Fatigue can show up in different ways. Maybe you’re super tired all the time, or you’re getting upset easily, or you don’t feel like doing much of anything. Or maybe you’re having a hard time thinking clearly. If you’re feeling any of these, it’s important to tell your doctor.
Try these tips to help explain your fatigue to your doctor:
- Keep track of how much sleep you’re getting each night.
- If you have a smart watch that tracks sleep, use it and show the results to your doctor.
- Make a note of any daily activities you’re having trouble with, or things you’ve stopped doing.
Then you can ask your doctor to help you figure out why you’re feeling so tired. For example, you might ask, “Could I have some other health issue that’s making me feel tired?”
Krivohlavek suggests treating your tiredness like pain. You know how doctors ask you to rate your pain on a scale of one to 10? You could do the same with your tiredness. Say something like, “I’ve been feeling so tired that it’s hard to do things or spend time with friends on six out of the past seven days.” This can give your doctor a clearer idea of what you’re going through. “Have a number to give them,” Krivohlavek says.
4. You can’t tolerate the side effects.
Any medication can have side effects, especially when you first start taking it. Some side effects are more tolerable than others.
Common treatments for psoriatic arthritis and their side effects include:
- Non-steroidal anti-inflammatory drugs – May lead to upset stomach, stomach pain, or ulcers
- Corticosteroids – Possible side effects include higher risk of infections, increased hunger, acne, quick mood swings, easily bruised skin, and muscle weakness
- Disease-modifying antirheumatic drugs (DMARDs) – May cause a decrease in appetite, upset stomach, diarrhea, stomach pain, skin rash, liver issues, and a higher risk of infections
- Biologic infusions – May lead to shortness of breath, chills, and itchiness
- Biologic injections – Side effects can include redness, itchiness, warmth, sensitivity to touch, and a rash over your entire body
- Janus kinase (JAK) inhibitors – Possible side effects include upset stomach, diarrhea, headaches, upper respiratory tract infections, and higher cholesterol levels
What to tell your doctor
It’s important to tell your doctor if the medicine they prescribed is causing side effects. According to Dr. Gelfand, often these side effects can be lessened without changing your whole treatment plan. For example, medicines like methotrexate that cause upset stomach can be taken in smaller doses over 36 hours. Or, you can take injections that avoid the digestive tract. As Dr. Gelfand says, “We often have solutions to these problems.”
Remember, you don’t have to just “deal with it.” When talking to your doctor, ask them how your treatment could affect you. Have your list of new symptoms ready to discuss.
5. Your vision is changing.
Psoriatic arthritis can cause inflammation in the eyes, especially a condition known as uveitis, which affects the middle layer of the eye. This can lead to redness, eye pain, and blurry vision. If not treated, it can result in loss of vision. A 2021 study in Frontiers in Medicine showed that 25 percent of people with PsA experience some form of uveitis. Dry eye is another eye issue linked to PsA.
Dr. Gelfand explains that developing uveitis doesn’t necessarily mean you need to change your treatment. Instead, a biologic like a tumor necrosis factor (TNF) inhibitor might be added to your regimen.
What to tell your doctor
Due to the risk of vision loss, it’s important to report any changes in your eyes to your doctor. An eye doctor can perform a simple dilated eye exam to check for uveitis. If you’re experiencing symptoms like blurry vision, floaters, eye pain, red eyes, or light sensitivity, tell your doctor right away. Ask for a vision test.
6. Your skin symptoms are getting worse.
Psoriatic arthritis affects people both inside and out. It can cause skin rashes that are itchy and painful due to a buildup of dead skin cells. These rashes are common on the knees, elbows, and scalp.
According to Dr. Gelfand, it’s not unusual for joint symptoms to improve with treatment while skin rashes stay the same. This is because treating the skin changes associated with psoriatic arthritis may require a higher medication dose or a different type of treatment. Your doctor may suggest increasing your medication dose, or adding light therapy or a topical cream.
What to tell your doctor
Show your doctor your skin rashes and describe where they are on your body, such as your knees, elbows, or lower back. Rate the pain and itchiness of the rashes on a scale of one to 10.
Keeping an ongoing dialogue with your doctor is vital for managing your psoriatic arthritis treatment. By maintaining open communication, your doctor can explore options such as changing, increasing, or adding to your current treatment to address all of your symptoms. Dr. Gelfand says, “These adjustments can help a patient continue on the successful path of controlling joint inflammation while trying to improve the skin.”
The Psoriatic Arthritis Club
The Psoriatic Arthritis Club podcast series delves deep into the ups and downs of living with PsA. Through intimate conversations with fellow patients and insights from leading experts, the series offers valuable information on how to manage symptoms, collaborate with health care providers, advocate for better care, and emotionally cope with the disease. Along the way, listeners will also pick up life hacks, tips, and tricks to live better with psoriatic arthritis. Listen now.
This article was made possible with support from AbbVie.
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