Thread by @SandhyaRheumat

#Sjogrens Syndrome - Year-end thoughts.
Ever since I have been a rheumatologist, I have always found diagnostic delay distressing, and perhaps nowhere is it as prevalent as in Sjogren's.
I am summarising some of my thoughts in a short-long🧵

⭕️The experiences of the very brave and inspiring patients have brought the focus back on the diagnosis of #Sjogrens

⭕️Even in a tertiary care centre where there is so much focus on identifying #Sjogrens -the success of rheumatologist in making a provisional diagnosis of Sjogrens was only ~64.84%.
#MedTwitter #RheumTwitter
pubmed.ncbi.nlm.nih.gov/31328441/

⭕️Rheumatologists make a clinical Dx based on pattern recognition & order tests to confirm the Dx.
⭕️Works extremely well in RA/ myositis/ scleroderma/lupus because there is a typical pattern & reliable biomarkers

⭕️#Sjogrens diagnosis is difficult as there are more varied manifestations & less reliable biomarkers.

⭕️In #India🇮🇳, our patients are younger and we soon realized that they were not seeking medical attention because of sicca.
They go to multiple departments / hospital visits before a diagnosis can be made for varied symptoms
(N=275 Ref: onlinelibrary.wiley.com/doi/10.1111/17…)

⭕️Information on the internet💻 reinforces the phenotypes of patients with severe #sicca and parotid swelling.
This takes away from the systemic nature of the disease. If the mind knows only the "classical" phenotype, the eyes would certainly miss...

My mentor @DandaDebashish trained us to think differently & hunt for #Sjogrens in patients with purpura, non-deforming arthritis, hypokalemic paralysis &renal tubular acidosis, small fiber neuropathy, ganglionopathy, dysautonomia, chronic pain syndrome, cytopenia, etc

⭕️to look for objective sicca, poor dental status in even those who denied sicca symptoms
⭕️and most importantly, screen for the above systemic features in any patient diagnosed with SS.

We are humans, and we may still miss the diagnosis.
There are many more patterns out there, we need to have an open mind and observe carefully. If a manifestation has an autoimmune basis, it is amenable to treatment, which can be life-changing for the patient.

⭕️Yes, the tests are not good enough. In #Sjogrens, we need to show evidence of damage to make a diagnosis!
In RA / AS, we do not wait for joint deformities or positive schobers anymore..we have moved on to early diagnosis.

⭕️None of the other diseases require an invasive procedure to confirm the diagnosis ( most of our seronegative patients do).
A rheumatologist alone cannot make a difference.
But there is hope bcos we are not alone in this - We have our colleagues and our patients.

⭕️If we have to diagnose and treat early, we need to talk to our colleagues in different specialties, who are likely to encounter #Sjogrens presenting with systemic features, exchange ideas, and learn from each other.

If we have to diagnose early, we need to engage with patients who are fighting the good fight and show a willingness to partner in bringing change.