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.