6 People With Psoriatic Arthritis On the Best Questions to Ask After a Diagnosis
Receiving a psoriatic arthritis diagnosis can be really difficult to process. For some people, the situation is equal parts relieving—there’s finally an explanation for all the pain they’ve been experiencing—and disheartening—there’s no cure for psoriatic arthritis, so it requires lifelong management and treatment.
You may have a hard time forming coherent questions when your head is swirling with so many feelings and thoughts after your psoriatic arthritis diagnosis, but asking your doctor questions during your appointments is really important. Doing so can help you start important conversations about the disease and make it easier to understand the process of finding a treatment that works for you. Further, asking questions and getting some reassurance about your treatment options can give you hope about getting back to doing things you enjoy but may have a hard time participating in because of your condition.
We asked people with psoriatic arthritis to share the most helpful questions they asked their doctors when they were diagnosed, and the questions they wish they had asked sooner. Here’s what they found useful.
1. What causes psoriatic arthritis?
“I need to understand why something is happening in order to accept it, which is especially tricky with an autoimmune disease where there are so many unknowns,” Sarah K., 35, who was diagnosed with psoriatic arthritis in 2009, tells SELF. Psoriatic arthritis happens when your autoimmune system attacks healthy cells in your body, causing joint pain, swelling, and stiffness, according to the Cleveland Clinic; there’s no explanation for why this happens, but experts theorize it may be due to genetics and environmental factors.
“Asking my doctor to explain what we do know (often several times in different ways) helped me conceptualize what is happening and ease the self-blame that I instinctively turned to. My doctor really helped me understand that I didn’t do anything to cause the condition,” Sarah says. And knowing that she can’t control everything made it easier for Sarah to focus on doing what she can to feel better overall—such as taking her medications, eating nutritious foods, and prioritizing rest—rather than worrying.
2. What are my treatment options?
There are numerous psoriatic arthritis medications, but they generally aim to control inflammation and minimize your pain and potential joint damage, according to the Cleveland Clinic. The exact type of treatment your doctor prescribes depends on the severity of your condition, but discussing your priorities with your physician and how medications can help you tackle them allows you to have some control over your medical condition.
When Gemma H., 35, was diagnosed with psoriatic arthritis in 2012, she found it comforting to learn about potential treatments, including what would happen if one didn’t work for her. “Asking about medications allowed me to research and understand things before I started taking them,” Gemma tells SELF. Discovering that there are many different medications she could try if one didn’t work helped relieve some of the anxiety she felt about running out of treatment options.
Keep in mind that your treatment options may change over time based on new research and newly available therapies. Make sure you have ongoing conversations with your doctor about which treatment options may be best for you.
3. What are the most common side effects of this treatment?
Treatment side effects vary depending on the individual and the specific medications you take. Even though your doctor won’t know how you might react to a specific prescription, Elizabeth M., 25, wishes she’d asked her doctor about common side effects and whether she could mitigate any reactions when she was diagnosed with juvenile psoriatic arthritis in 2010. Elizabeth initially took methotrexate, a medication commonly used as a first-line treatment for people with psoriatic arthritis that can cause fatigue and nausea. “I came off methotrexate due to side effects even though it seemed to help, and, years later, I know now that I might not have had side effects if I was prescribed folic acid in addition to methotrexate,” she tells SELF. (Taking folic acid along with methotrexate can help reduce the medication’s side effects, according to John Hopkins Arthritis Center.)
4. How can I stop my psoriatic arthritis from getting worse?
This was the first question Jennifer R., 35, asked her doctor when she was diagnosed in 2015. At the time she was in a lot of pain and wanted to know if she would feel that way forever. “My doctor did say the condition was lifelong, and the idea was to stop the disease’s current progression,” she tells SELF. “I learned that if I found medications that worked, I would be in less pain. Knowing that bit of information helped because I had hope. My doctor made sure I knew it was going to be a process, and having a realistic outlook helped me move forward,” she says.
Similarly, Elizabeth wishes she had asked how controlling her psoriatic arthritis could affect her overall health. “Everyone talks about joint damage, which is a serious risk. But I wish I knew to bring up items like heart health—which can be affected by the inflammation from psoriatic arthritis,” she says. Knowing this, Elizabeth says she would have spent more time thinking about ways to care for herself that didn’t just focus on her joints.
5. How can I reduce my chances of flare-ups?
People with psoriatic arthritis often experience periods when their inflammation is particularly high and their joints are very painful. Ultimately, there’s no sure-fire way to avoid these flares, which is helpful to know early on because it helps you manage expectations, says Amanda B., 29, who was diagnosed with psoriatic arthritis in 2019. “My doctor told me that you can do everything ‘right,’ like taking medications on a strict schedule and exercising, and still have a flare-up. It’s still hard for me to accept that sometimes, but it’s just the nature of a chronic illness,” she tells SELF. That said, some people can achieve remission of their symptoms with treatment and feel like they have more control over their lives.
6. What are the best exercises I can do?
Medical experts recommend staying as active as possible when you have psoriatic arthritis to keep your joints flexible, according to the Mayo Clinic. However, exercising when you’re in pain can feel burdensome, which is why Elizabeth asked her doctor for exercises that suited her abilities. “This question was valuable because it encouraged me to find ways to exercise that were not painful or bad for my joints. My doctor was big on swimming and cycling, and they helped,” she says.
Along the same lines, your doctor may have advice about how you can do things you enjoy but have trouble with, such as running. Your physician may offer alternatives to your preferred activity that are gentler on your body, or they might refer you to a physical therapist who can help you with mobility, strength, or workout plans.
7. What if I want to get pregnant?
Some psoriatic arthritis treatments can be harmful to fetuses, so if you hope to get pregnant, it’s important to tell your doctor so you can work together on this goal. Elizabeth says that at the time of her psoriatic arthritis diagnosis, she was a little embarrassed to talk about her sexual health with her physician. “I was diagnosed as a teenager and had questions regarding how psoriatic arthritis would affect my ability to have children in the future, but I felt too awkward to ask. Thankfully, that was a discussion my doctor brought up as I got older, so eventually I got answers,” she says. Alyssa A., 32, immediately asked her physician how psoriatic arthritis could affect pregnancy when she was diagnosed in the spring of 2021. Alyssa’s rheumatologist wasn’t as helpful as she hoped, but her ob-gyn thoroughly answered her questions. If you’re in a similar situation and are able to get a second opinion, it may offer more clarity and reassurance.
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