A snapshot in time

In a recent social media post we asked a simple question : “How long did it take from the onset of your symptoms to a diagnosis?”

The responses describe experiences ranging from a few months to several decades, alongside accounts of persistent pain, repeated consultations and life-changing improvements with treatment.

The captured discussion contains 59 comments from 57 distinct accounts. Of these, 54 accounts contributed experiences or observations beyond tagging another person or posting a brief supportive message. Not everyone supplied a diagnostic timeline, and some were still awaiting assessment or a confirmed diagnosis. The caveat is this is a self-selected group who may not represent a complete community, but interesting none the less.

Although this was an informal discussion rather than a representative survey, delay emerged as a recurring concern. Contributors described symptoms being attributed to growing pains, fungal nail infection, hypermobility, polymyalgia rheumatica or age-related aches before a later diagnosis of psoriatic arthritis.

Some respondents reported relatively short waits, including approximately two months, a year and 18 months. Others gave intervals of seven, ten, fifteen, twenty-seven and thirty or more years. One response simply stated “42 years”, while another described “Nearly 30 years and 3 rheumatology referrals after first having symptoms!!”

Several contributors recalled joint problems in childhood but did not receive a diagnosis until adulthood. One described symptoms beginning at nine and diagnosis at 22. Another reported joint pain from around ten, with a diagnosis approaching their 60th birthday. These are retrospective personal accounts, rather than independently verified medical histories.

Repeated appointments and a lack of continuity also featured. One contributor described having to start again as GPs changed; another said obtaining a rheumatology referral required changing GP and advocating for themselves. Others identified an observant clinician, ultrasound investigation or specialist assessment as a turning point.

Confusion over blood tests

The discussion highlighted uncertainty about the role of blood tests. Some contributors described ongoing symptoms despite apparently normal results, while others reported raised inflammatory markers without a clear diagnosis.

This is an important distinction: there is no single test that can diagnose or rule out psoriatic arthritis. Assessment draws on symptoms, examination and investigations. NICE advises that normal inflammatory markers do not exclude spondyloarthritis, the group of conditions that includes psoriatic arthritis.

The comments also showed why awareness needs to extend beyond painful joints. Contributors described nail changes, swollen fingers and toes, heel or tendon pain, back symptoms and fatigue. Some reported that these problems had been considered separately before a diagnosis brought them together.

Diagnosis is not the end of the journey

Receiving a diagnosis did not always mean symptoms were quickly brought under control. Contributors described treatment interruptions, suspected side effects, medicines becoming less effective and other health conditions complicating care. Several reported continuing difficulties with walking, hand function and everyday activities.

One contributor described being unable to close a hand or open things normally, calling the experience “mentally and emotionally exhausting”. Others emphasised the importance of family support and adapting daily life around pain and reduced mobility.

There were encouraging accounts too. One respondent described progressing from reliance on a walking stick to walking again with manageable symptoms after treatment adjustments. Another, writing about their husband, reported substantial improvement following a diagnosis and treatment. These experiences illustrate the potential benefit of care, but do not establish which medicine will suit another person.

Keeping awareness going

The responses give a personal perspective on the importance of recognising symptoms and reviewing persistent problems. NICE recommends annual assessment for psoriatic arthritis in people receiving treatment for psoriasis, while noting that the commonly used PEST screening questionnaire does not detect spinal arthritis or inflammatory back pain.

For readers, the practical message is to seek assessment for recurring joint pain, swelling or stiffness, particularly when accompanied by psoriasis or nail changes, and to explain the full pattern of symptoms, including their effect on everyday life. The NHS advises seeing a GP for recurring joint pain, stiffness and swelling.

Why not share your experience?

Explore further what is psoriatic arthritis?.