Young adults frequently present to primary care with vague, lingering complaints that are too often labelled “stress” or residual viral illness—yet, as Dr Anindita Santosa explains, these soft symptoms can be the earliest signals of a systemic autoimmune disease.

Drawing on her clinical practice in Singapore (and substantial cross‑border experience with Malaysian patients), Dr Anindita sets out the symptom clusters, routine test patterns and practical steps that both patients and GPs should use to shorten diagnostic delays that leads to better outcomes.

In this interview by PP Health Malaysia (PPHM), Dr Anindita offers clear, pragmatic guidance—on what to look for, what to document, and how to navigate healthcare systems—that aims to transform fleeting reassurance into timely investigation and, ultimately, better outcomes.

While Dr Anindita practises in Singapore, she does have a significant number of patients who are Malaysian, and many of the access patterns are similar across the two systems.

Q: How patients can report symptoms more usefully

A: Patients do themselves a disservice when they minimise. The fix is structure, not volume. I ask patients to come prepared with three things: a timeline (when did this start, what has changed since), a pattern (when in the day, how often, what makes it better or worse), and an impact statement (what specifically is harder now). “My fingers are stiff for forty minutes when I wake up, every day for the past two months, and I’ve started dropping my coffee mug” is a vastly more useful sentence than “my hands hurt sometimes”. The first sentence triggers tests. The second triggers reassurance.

Q: When patients suspect something persistent is wrong but are told it’s “stress” or “normal”, what specific documentation (symptom diary templates, photos, daily activity logs) do you recommend they bring to their GP to increase the chance of early escalation?

A: When a patient feels their concerns are being parked, the most powerful thing they can do is convert subjective experience into objective record. I recommend the following:

•      A symptom diary, kept for at least four to six weeks. Three columns are enough: date and time, symptom and severity (0–10), and what they were doing. Patterns emerge that neither patient nor doctor would otherwise see — for example, fatigue clustering forty-eight hours after exertion, or joint pain that is worst on waking and improves by midday.

•      Photographs of visible signs. Rashes, swollen joints, mouth ulcers, fingers in Raynaud’s. Phones make this trivial. Date-stamped images are diagnostic gold because rashes and swelling almost always disappear by the time the patient sees the doctor.

•      A simple activity log. Steps per day from a phone or watch is enough. A graph of declining daily steps over months is hard to dismiss as stress.

•      A medication and supplement list, including the over-the-counter painkillers and the dose. This matters because chronic NSAID or paracetamol use is itself a signal of unmanaged inflammation.

•      A family history written down, not recalled in the consultation. First-degree relatives with autoimmune thyroid disease, lupus, rheumatoid arthritis, type 1 diabetes, coeliac disease, vitiligo, psoriasis, multiple sclerosis. Autoimmunity clusters in families, often across different organ systems.

•      Past investigations the patient already has, printed or downloaded. A lymphocyte count from two years ago that was already low changes the conversation.

The goal of all of this is to remove ambiguity. A consultation where the patient says “I don’t feel right” lasts seven minutes and ends with reassurance. A consultation where the patient produces a six-week diary, three rash photographs, a step-count graph, and a family history document lasts seven minutes and ends with a referral.

Q: What targeted questions should patients ask their GP to help surface autoimmune red flags during a short consultation (phrases that prompt action rather than reassurance)?

A: Short consultations reward specificity. The questions below are phrased to make it harder for a clinician to close the loop with “let’s wait and see” without first thinking it through.

•      “What is the working diagnosis, and what would change your mind about it?” This forces an explicit hypothesis.

•      “If this is stress or a virus, what would you expect to see in six weeks, and what should I do if it is still happening?” This builds in a safety-net consultation rather than an open-ended dismissal.

•      “Could this be the early stage of something inflammatory or autoimmune, and what would you do to rule that out?” Naming the category often unlocks a different test panel.

•      “Are there any blood tests that, if abnormal, would change what we do?” This invites the doctor to make a plan, not a gesture.

•      “If my symptoms are still present in four weeks, what is the threshold for referral to a specialist?” This sets a tripwire.

•      “Could you document in my notes that I have raised the possibility of autoimmune disease?” This is not adversarial. It changes how the next clinician reads the file.

None of these are hostile questions. All of them shift the consultation from reassurance-mode to differential-diagnosis mode, which is where the patient needs to be.

Q: How can patients navigate the system if they feel their concerns are being repeatedly dismissed—what are safe, practical steps to request repeat testing, second opinions, or expedited specialist review in Singapore’s or in Malaysia healthcare setting?

A: Both Singapore and Malaysia have public and private pathways, and the practical levers are similar even if the structures differ. The most important thing patients need to know is that being told “it’s nothing” by one clinician does not close the matter.

Practical, escalating steps;

•      Ask for repeat testing with a defined interval. If bloods were normal but symptoms persist, request a repeat in six to eight weeks rather than “if it gets worse”. Many autoimmune conditions evolve serologically over months.

•      Request a documented referral, not a recommendation. In Malaysia, this means asking for a written referral letter to a hospital specialist clinic (Klinik Pakar) — public via Klinik Kesihatan, or private. In Singapore, this means a polyclinic or GP referral letter, which carries different fee structures than walk-in private specialist visits.

•      Use private rheumatology selectively if affordable. A single private specialist consultation, even as a one-off, can either de-escalate concern with authority or trigger the right investigations. Many patients find that one private visit unlocks a public-system pathway they could not access directly.

•      In Malaysia’s public system, the Hospital Kuala Lumpur, UMMC, HUKM, Hospital Sungai Buloh and Penang General Hospital have rheumatology services; not every state hospital does. If the local hospital lacks a rheumatologist, the GP referral should explicitly request the nearest tertiary centre. Patients can ask for this.

•      In Singapore, the public restructured hospitals (SGH, NUH, TTSH, CGH, KTPH, NTFGH) all have rheumatology departments, and polyclinic referrals are subsidised. Private rheumatology is widely available. Insurance pre-authorisation matters; patients should ask their GP to write the referral with explicit symptom documentation and provisional diagnosis, not just “for review”.

•      Second opinions are not rude. If a patient has been told twice by two different GPs that nothing is wrong but symptoms persist for more than three months, the next step is a specialist, not a third GP. Patients should be told this explicitly.

•      Bring a written summary to every new clinician. One page, dated, with timeline, symptoms, prior tests, and prior opinions. This shortcuts the “tell me your story from the beginning” problem and makes it harder for a new doctor to start from a position of dismissal.

If a patient feels they are being repeatedly waved off, the question to ask is not “am I being dramatic?” but “has anyone actually formed a differential diagnosis?” If the answer is no, the system has not yet engaged with the problem.

Q: How can patients prepare for a specialist rheumatology appointment so the limited time is used effectively (which records, timelines, photos or family history details are most helpful)?

A: A first rheumatology consultation is typically thirty to forty-five minutes in private practice and considerably less in public clinics. Most of that time is taken by history, not examination.

Patients who prepare well typically leave with a working diagnosis or a focused plan; patients who do not often leave with “let’s do some bloods and see in three months”.

What helps most:

•      A one-page timeline. First symptom, what changed and when, what is now present. Dated bullet points are perfect.

•      All previous blood results, not just the abnormal ones. Trends matter as much as values. If results are scattered across multiple labs, request copies in advance.

•      Imaging reports and discs. If there has been an X-ray, ultrasound or MRI, bring the report and the images. Rheumatologists often re-read images.

•      Photographs of episodic findings. Rashes, swollen joints, Raynaud’s. These are often gone by the time of the appointment.

•      A medication and supplement list with doses, including traditional or herbal remedies, which can affect immunology testing and treatment choices.

•      A family history. Specifically autoimmune conditions in first- and second-degree relatives.

•      Reproductive history and intent, for women of childbearing age. This genuinely changes treatment choices and should be raised on the first visit, not the third.

•      Vaccination history, particularly live vaccines (MMR, varicella, yellow fever) and recent COVID-19 boosters. This affects what we can offer immediately.

•      A short list of priority questions, written down. Three is the right number. More than five tends to dilute the appointment.

And one more thing patients underestimate: bring someone. A second pair of ears in a complex consultation catches things the patient will forget within an hour. 

Q: What role should family members or close contacts play in recognising early red flags (changes in cognition, persistent cough, reduced exercise tolerance) and how can patients empower them to help without causing alarm?

A: Family members are often the first to notice the changes that the patient has normalised. The wife who notices her husband can no longer keep up on a walk. The teenage child who notices their parent is forgetting words. The flatmate who sees the rash that the patient swears has gone.

There are three specific patterns I ask families to watch for, particularly in patients with established or suspected autoimmune disease:

•      Cognitive change. Slower word-finding, repeating questions, losing track in conversation. This is not normal at thirty or forty.

•      Persistent cough or breathlessness. Particularly subtle reduction in exercise tolerance — a flight of stairs that used to be easy. This can be the first sign of interstitial lung disease, which is a major cause of mortality in scleroderma, dermatomyositis, and rheumatoid arthritis.

•      Withdrawal and inactivity. Cancelling plans, sleeping more, declining exercise — patterns that look like depression but can also be inflammatory fatigue or early disease flare.

How to empower family without alarming the patient: I encourage open, non-clinical observation. Phrases like “I noticed you seemed more out of breath today, can we keep an eye on that?” work better than “you need to see a doctor”.

I ask families to keep their own informal notes — when did the cough start, how long has the patient been napping in the afternoons — and to come to appointments when invited. Patients with autoimmune disease often gaslight themselves; a calm, observant family member can be the most important diagnostic instrument in the room.

Q: For patients with confirmed autoimmune disease, what self-management behaviours (vaccination planning, infection precautions while on immunosuppression, pregnancy planning, dental care) are commonly missed that GPs should support early on to prevent complications?

A: Once the diagnosis is made and treatment is started, there is a quiet group of preventive measures that consistently get missed in the first year. Each of these has prevented serious complications in patients I have looked after.

•      Vaccination planning before immunosuppression. Live vaccines (MMR, varicella, yellow fever, live shingles, BCG) become contraindicated once high-dose immunosuppression begins. The window to catch up on these is before treatment escalates. Inactivated vaccines — annual influenza, pneumococcal (PCV13/15 followed by PPSV23), recombinant zoster, hepatitis B, HPV where age-appropriate, and COVID-19 boosters — should be planned in. In Malaysia and Singapore, recombinant shingles vaccine (Shingrix) is now widely available privately and is strongly recommended in immunosuppressed patients over fifty.

•      Infection precautions while on immunosuppression. Hand hygiene, avoiding obvious exposure during local outbreaks, dengue precautions in this region (which are not optional), travel medicine review before any trip, and a low threshold for seeking care for fever. Patients on biologics or high-dose steroids should know what counts as a fever (38°C is the threshold to act) and have a plan, not improvise.

•      Pregnancy planning. This is the area where I see the most preventable harm. Methotrexate, mycophenolate, leflunomide and cyclophosphamide are all teratogenic and require defined wash-out periods. Hydroxychloroquine, azathioprine, sulfasalazine, certolizumab and tacrolimus are generally compatible with pregnancy. Conception should be planned, not improvised, and ideally six to twelve months before attempted conception. Antiphospholipid screening matters for any patient with lupus or recurrent miscarriage. Men on methotrexate or sulfasalazine also need pre-conception counselling — this is forgotten almost universally.

•      Dental care. Active dental sepsis is a contraindication to many biologics and increases infection risk on all immunosuppression. A baseline dental review before starting therapy, and six-monthly thereafter, prevents avoidable problems. This is rarely on the discharge plan.

•      Bone health. Glucocorticoids drive bone loss within months. Calcium, vitamin D, and a baseline DEXA in anyone on prednisolone above 7.5mg for more than three months. This is a five-minute conversation that prevents fractures a decade later.

•      Cardiovascular risk. Inflammatory disease itself accelerates atherosclerosis. Blood pressure, lipid profile, and HbA1c should be checked annually. Many of these patients will need a statin earlier than their non-autoimmune peers.

•      Sun protection and skin surveillance. Particularly in lupus and dermatomyositis. Daily broad-spectrum SPF, not just on holiday. And immunosuppressed patients are at higher risk of skin cancer; an annual skin check is cheap insurance.

•      Mental health. Depression and anxiety are co-travellers in chronic autoimmune disease. They are not weakness; they are part of the illness biology. Screening at every annual review is appropriate.

A lot of these sit naturally in primary care and can be delivered by the GPs in partnership with the rheumatologists. The patient outcomes are dramatically better when GPs own this prevention list.

Q: From your perspective, how important is evidence-based health journalism (sites like PP Health Malaysia) in correcting misconceptions about autoimmune disease and encouraging timely help-seeking? What are the most common misleading headlines or narratives about autoimmune disease in popular media that you wish journalists would avoid or correct?

A: I think evidence-based health journalism is one of the most underrated public-health interventions we have. Most patients with autoimmune disease arrive at my clinic having already done their reading. Whether that reading helps them or harms them depends entirely on what they found.

A patient who has read a careful article about lupus arrives ready to have a sensible conversation about treatment trade-offs. A patient who has read three sensational articles arrives terrified, mistrustful, and often committed to a course of action that will hurt them.

Outlets like PP Health Malaysia (PPHM) matter precisely because they sit in the middle of that ecosystem. They are read by patients before they reach a specialist. They shape the language patients use. They influence whether a person sees a six-week stiffness in their hands as a problem worth raising or a sign of getting older.

The narratives I wish media would correct

•      “Autoimmune disease can be cured by diet.” Diet, sleep, exercise and stress matter — they MODIFY disease activity meaningfully. They DO NOT CURE rheumatoid arthritis, lupus or vasculitis. Articles that imply otherwise lead patients to defer treatment until permanent joint or organ damage has occurred. I have seen this many times, and the damage is rarely reversible.

•      “Steroids are dangerous, biologics are dangerous, all immunosuppression is dangerous.” Untreated inflammatory disease is dangerous. The risk-benefit calculation almost always favours treatment, often urgently. Headlines that frame medication as the threat — without the disease as the comparator — drive non-adherence and preventable harm.

•      “It’s all just stress.” This is the single most damaging public narrative about autoimmune illness in young women. It delays diagnosis by years.

•      “Autoimmune disease is rare.” Collectively, autoimmune diseases affect five to eight per cent of the population. Each individual condition is uncommon; the category is not. Framing it as rare encourages clinicians and patients to think of it last, when it should be thought of earlier.

•      Celebrity-driven miracle cures. A high-profile remission story almost always leaves out the medication, the supportive care, and the survivorship bias.

•      False reassurance about test results. “Your ANA is positive — you have lupus” and “your ANA is negative — you don’t have lupus” are both wrong, and both appear in popular health writing routinely.

What good autoimmune journalism does well

It names the symptom clusters in plain language. It distinguishes the categories that are commonly confused — autoimmune from autoinflammatory, allergy from immune deficiency, fibromyalgia from inflammatory arthritis.

It treats patients as intelligent adults who can hold uncertainty. It platforms patient stories without making them prescriptive. And it tells readers, clearly, when to see a doctor — with specific thresholds, not vague encouragement.

The single most useful sentence a health journalist can write about autoimmune disease is some version of: if these symptoms have persisted for more than six weeks and your GP has reassured you without a clear diagnosis, ask explicitly whether autoimmunity has been considered, and request a specialist opinion if it has not.

That sentence, repeated often enough, would shorten diagnostic delays in this region by years.

The second part of this interview is written for general practitioners and primary‑care teams

This offers practical, evidence‑based advice to help recognise, investigate and document early autoimmune disease so patients reach the right diagnosis faster and with fewer missed opportunities.

It focuses on the clinical red flags, useful test patterns, targeted questions to ask in a brief consultation, and simple documentation tools that make referrals more effective — all designed to make diagnosis more reliable and to reduce unnecessary delays.

Q: In your experience, what are the most common “soft” symptom clusters young adults report that GPs dismiss as stress or viral illness but which later herald a systemic autoimmune disease?

A: If I had to name the single most common pattern I see in young adults whose autoimmune diagnosis was delayed, it would be this triad: persistent fatigue that does not recover with sleep, polyarticular joint stiffness that is worst in the morning, and a sense that they are simply not as resilient as they used to be — exercise tolerance, cognitive stamina, recovery from minor infections, all subtly reduced.

Each symptom on its own is easy to attribute to stress, overwork, or a viral aftermath. Clustered together, sustained for more than six weeks, they are a different conversation.

The clusters I want primary care to know about are:

•      Inflammatory musculoskeletal pattern: morning stiffness lasting more than thirty to forty-five minutes, symmetrical small-joint discomfort (hands, wrists, feet), pain that improves with movement rather than worsening with it. The classic mistake is treating this as repetitive strain or “gym soreness”.

•      Mucocutaneous and photosensitivity cluster: recurrent oral ulcers, unexplained rashes that flare with sun exposure, hair shedding beyond normal seasonal loss, Raynaud’s phenomenon (fingers turning white then blue then red in the cold or with stress). These are often dismissed as canker sores, eczema, or “sensitive skin”.

•      Sicca and constitutional cluster: dry eyes, dry mouth, low-grade fevers, drenching night sweats, weight loss without dieting. Young women in particular are told this is anxiety or perimenopause when neither fits the picture.

•      Neurocognitive and autonomic cluster: brain fog that is qualitatively different from tiredness, postural lightheadedness, exercise intolerance, palpitations. This overlaps significantly with what is now recognised as post-viral and dysautonomic syndromes, but it can also be the presenting feature of lupus, Sjögren’s, or vasculitis.

•      Serositic whispers: intermittent pleuritic chest pain, shortness of breath on exertion, pericardial-type discomfort that comes and goes. Often labelled as costochondritis or anxiety, sometimes for years.

The diagnostic insight is rarely one symptom — it is the combination, the duration, and the trajectory. If a young adult is reporting two or more of these clusters, persistently, for more than six to eight weeks, the working hypothesis should not be “stress” until autoimmunity has been actively considered and reasonably excluded.

Q: Which routine blood-test patterns in primary care—often considered non-specific—should or should not trigger an urgent rheumatology or immunology escalation?

A: Primary care does not need to order an extensive immunology panel to recognise a problem. Several patterns on a basic FBC, ESR, CRP, urinalysis and biochemistry are highly suggestive when interpreted in clinical context.

Patterns that should trigger urgent rheumatology or immunology review

•      Persistently raised ESR or CRP without an obvious infective source, particularly in a patient with constitutional or musculoskeletal symptoms. A single elevated reading can be ignored. A second elevated reading four to six weeks later cannot.

•      Unexplained cytopenias: lymphopenia (especially below 1.0), thrombocytopenia, or normocytic anaemia in a young person who is not menstruating heavily and is not iron-deficient. Lymphopenia is one of the most under-investigated abnormalities I see — it is treated as “probably viral” for years.

•      Proteinuria or microscopic haematuria on dipstick in a young, otherwise well person, especially with any rash or joint symptoms. This must not be sent home with a follow-up urinalysis “in three months”.

•      Raised creatinine kinase in a patient with proximal muscle weakness or unexplained myalgia.

•      Polyclonal hypergammaglobulinaemia or unexplained raised globulin fraction on a routine biochemistry profile.

•      Abnormal liver enzymes in a non-drinker without metabolic risk factors, particularly if accompanied by fatigue or arthralgia.

Patterns that should not, on their own, trigger urgent referral

•      A weakly positive ANA in isolation in an asymptomatic patient. Up to 10–15% of healthy people have a low-titre ANA. The danger is not under-referral here — it is over-investigation that creates anxiety and a “lupus” label that does not exist.

•      An isolated mildly raised CRP during or just after an obvious infective illness.

•      A single abnormal result without symptoms or a corroborating second result.

The principle I would offer GPs is simple: investigate the patient, not the number. A positive ANA in someone with arthritis, rash, and fatigue is a different signal from a positive ANA found on a wellness screen. The first needs a rheumatologist within weeks. The second usually needs reassurance and observation.

Q: What patient-reported signals or language often underplay the seriousness of symptoms (phrases patients use) and how should clinicians reframe questions to surface red flags earlier and how should patients report their symptoms to make diagnoses more reliable, is there a way to make this better?

A: Patients almost never walk in and say “I think I have an autoimmune disease.” They walk in and say things that sound mundane. The clinician’s job — and increasingly, I think, the patient’s job — is to translate that language into something that can be acted on.

Phrases I have learned to listen for

•      “I’m just tired all the time.” This is the most common red herring in medicine. It hides post-exertional malaise, unrefreshing sleep, inflammatory fatigue, and depression — all of which require different responses.

How clinicians should reframe their questions

Closed questions miss autoimmune disease. Instead of “Are your joints painful?”, I ask: “When you wake up, how long does it take before your hands feel like your hands again?”

Instead of “Are you tired?”, I ask: “If you do something on Monday — exercise, a long meeting, a flight — how do you feel on Tuesday and Wednesday?” Instead of “Any rashes?”, I ask: “Has your skin behaved differently in the sun this year compared to last year?”

The single most useful question I know is: “What can you not do now that you could do a year ago?” If a patient has a confident, specific answer — climbing stairs, gripping a bottle, finishing a workout — that is data. That is a trajectory.

Closing thought.

Dr Anindita emphasises that autoimmune diseases are generally treatable, but they remain under‑diagnosed. The greatest improvement we can achieve in this region over the next decade will not come from a new drug but from reducing the time between a patient’s first symptom and their first specialist appointment. That gap is closed by sharper general practice, better‑prepared patients, and evidence‑based journalism that helps both groups speak the same language.

The medical information in this interview is contributed by Dr Anindita Santosa, consultant rheumatologist, clinical immunologist, the founder of Aaria Rheumatology and CEO of AIGP Health