Psoriatic Arthritis Treatment Expectations & Outcomes
Psoriatic arthritis can have a significant effect on a person’s life, but timely and appropriate treatment can help reduce its impact. When choosing a treatment option, it is important to know there is often a gap between what people with psoriatic arthritis thought treatment would be like and what it is really like.
Understanding the myths and realities of treatment
To learn more about the myths and realities of treatment, we reached out to community members on our Facebook page. We asked you, “What are your treatment expectations, and have they changed since your diagnosis?”
Generally, the responses could be summed up in the following ways:
Expectations before PsA treatment
People in our community said they expected to have:
- Quick, or fairly quick, relief from symptoms
- Slower advancing disease
- The ability to go back to their normal lives
- Fewer doctor visits and tests
- Good results from the first treatments they tried
- Fewer side effects compared with earlier treatments
The most common things we heard from people followed these themes:
“What I didn’t realize is the amount of testing I still needed and trialing with meds. I also thought once I started seeing a rheumatologist that I would just instantly get Humira and be better in 6 months. I was mistaken.”
“Managing skin symptoms, while slowing joint damage. For me, what’s frustrating is the tendonitis – nothing seems to help it. I have Voltaren gel, but it’s not particularly effective. I’m taking NSAIDs, so using a topical as well concerns me regarding liver and kidney damage.”
Realities of PsA treatment
Instead, people who took our survey said the reality was:
- Treatments took much longer to work than they expected.
- Their most troublesome symptoms often stayed the same.
- They needed to change treatments often to find the right combination that worked for them.
- New side effects could be worse than the symptoms or old side effects.
- New treatments might not slow their disease.
- New treatments might not be easier on their body or their pocketbook.
Some comments we heard included:
“I thought I would be my old self and completely pain-free on methotrexate. I now understand that I need to adapt to my new self and make adjustments to compensate for the things that I find hard now.”
“It took a solid year for me to establish and know what works for me.”
“My problem is I’m always sick and on antibiotics, and now I have Covid so I can never get on a regular schedule for medication. Biologics work for me if I can get on track.”
“Unfortunately, we will never get our old lives back. This disease is so challenging. After 30+ years of PsA, I was diagnosed with heart, hearing, and vision problems. All related to psoriatic arthritis. My Humira stopped working after 10 years. Six months of pain (24/7) later, I am receiving Remicade IV infusion and am doing much better.”
People across the pond say the same thing
A group of British doctors held 8 focus groups to find out what treatment results were most important to people with PsA. They found the most important results for people were:1
- Relief from pain, fatigue, itching skin, inflammation, swelling, stiffness, and changing symptoms
- Better quality of life, such as better sleep, more mobility, and better mental health and relationships
- Slower disease progression
- More independence and sense of normalcy
- Less nausea, sickness, and worry
- Easier treatments with less follow-up testing
As a result of these focus groups, the study recommended that doctors focus more on relieving pain and fatigue in particular. By paying closer attention to what people living with psoriatic arthritis want, doctors could improve the success of treatment.1
Did you find your expectations for treatment and the reality were different? Please share your experiences with us.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?