My 70-Year Journey to a Psoriatic Arthritis Diagnosis

I am writing this to understand what has happened over the last 70 years. I want to know why it took so long to get a diagnosis of psoriatic arthritis (PsA).

Knowledge of this disease has advanced rapidly in the last decade. Perhaps no one recognized PsA in the 1950s. I know my mother said I was often constipated as a baby. I was an active child, but not athletic.

Early signs of autoimmune issues

I had my first episode of polymorphic light eruption when I was 12. This condition has plagued me every day since then. Because this is an autoimmune disorder, it is safe to say I have had one since I was 12. I suspect I have had it my entire life. Psoriasis and psoriatic arthritis are genetically inherited.

I started my menses at 16 and had severe cramps from the first day. I lost my first pregnancy and learned I was Rh-negative. I had an injection for the Rh factor and went on to have 3 children. Eventually, I had a full hysterectomy. This was a huge relief, though I am not sure if it relates to PsA.

Struggles with chronic pain

In college, I took a required gymnastics class and ended up in horrible pain. A specialist told me my ligaments and tendons were very tough. They did not want to stretch or twist.

My lumbar and sciatic joints were always very tender. I struggled with many types of pain, including:

• Hip pain
• Achilles heel pain
• Knee and ankle pain
• Shoulder pain

Finally, my doctor said I had fibromyalgia. I went to a rheumatologist who said I had Sjogren’s and Raynaud’s. He did blood work and said I had chronic inflammation. I was immune-system compromised. This was the first time I had heard that. He gave me a drug for dry eyes.

Seeking answers for joint damage

My hip became so painful that I could not tie my shoes or walk without a cane. I finally had a hip replacement. After the surgery, the surgeon said the damage was in an odd place. It was on the inside of the ball, not the top. He was flummoxed, but it was fixed.

When my rheumatologist retired, I saw a new doctor. During my first visit, I noticed a red, hot, swollen middle finger. I asked her what was going on.

A surprising diagnosis

She asked if any family members had psoriasis. My brother has a severe case of it. I had a few weird patches as a teenager, but they went away. I did not think I had psoriasis.

The doctor said, "I think you have psoriatic arthritis, without the skin plaque". I was shocked. I never knew it existed. After tests, she started me on Cimzia infusions and methotrexate.

I am grateful the PsA was caught when it was. It has not progressed much since my diagnosis in 2021. I still feel random pains, achiness, and exhaustion. I often feel lonely because I have no one to talk to about this.

I have spurs on my knee joints. My lumbar and sciatica are degenerating. Steroid injections help me cope. Mobility is still a big issue. Sometimes my joints give up while walking to the car.

I wonder if the disease will stay the same with treatment. Once, I was 2 weeks late taking my methotrexate. The shooting pains in my fingers started immediately. I will try not to let that happen again!