Autoinflammatory (periodic fever) syndrome assessment

A specialist assessment for people with recurrent, unexplained fevers and inflammation, to look for an autoinflammatory (periodic fever) syndrome, which is a problem with the innate immune system rather than ordinary infections.

✓ Medically reviewed by a GMC-registered consultant · last reviewed September 2026 · next review September 2027 · how we review

In short

Autoinflammatory syndromes cause recurrent fevers and inflammation from an overactive innate immune system — they are not the same as recurrent infections.
Diagnosis relies on the pattern of attacks, inflammation markers measured during and between episodes, and genetic testing, not a single test.
A normal genetic test does not always exclude an autoinflammatory syndrome, and a found gene change is interpreted alongside the clinical picture.
Untreated, ongoing inflammation can lead to amyloidosis and organ damage, so specialist assessment and follow-up are important.

A plain-English summary. The detail — including risks and recovery — is below.

At a glance

TypeSpecialist assessment with tests

AnaestheticNot needed

How long it takesInitial appointment about 30–60 minutes; tests arranged separately

Hospital stayOutpatient

Time off workUsually none for the assessment

When you'll see resultsWeeks, as inflammatory markers and genetic tests take time

On the NHS?Available on the NHS when clinically indicated, often through specialist centres; also offered privately

A general guide. Your specialist will give you advice for your situation.

Best fit

Can identify a specific autoinflammatory syndrome and end years of uncertainty.

Pause if

It is the wrong pathway for a single acute fever, which may be infection needing urgent assessment.

Main recovery point

Detailed history, examination and initial inflammation blood tests. You may be asked to have bloods taken during a future attack.

Good aftercare

A clear written diagnosis or explanation, with the specific syndrome where identified.

First appointment

Detailed history, examination and initial inflammation blood tests. You may be asked to have bloods taken during a...

Days to weeks

Genetic tests and further bloods are processed, often through a specialist laboratory, which can take several...

Results appointment

The specialist explains whether an autoinflammatory syndrome is likely, which one, and what it means, and...

Ongoing

A treatment plan is started where appropriate, with monitoring of inflammation and checks for complications such...

Medical line illustration of immunology and autoimmune pathways for Autoinflammatory (periodic fever) syndrome assessment. — Illustration only - not a diagnosis, medical advice or a promise of result. Your anatomy and treatment plan may differ. Vuemedics does not publish before-and-after photos.

What is an autoinflammatory (periodic fever) syndrome assessment?

Autoinflammatory syndromes are conditions in which the innate immune system, the body's fast, general defence, switches on inflammation without a good reason. This causes repeated episodes of fever and inflammation, often with rashes, joint or tummy pains, chest pain or swollen glands, in a person who is otherwise well between attacks.

These are not the same as recurrent infections, and they are different from allergies or classic autoimmune diseases. Examples include familial Mediterranean fever (FMF), TRAPS, the cryopyrin-associated periodic syndromes (CAPS) and mevalonate kinase deficiency (MKD, also called hyper-IgD syndrome). They are uncommon and easily mistaken for repeated infections, so specialist assessment matters.

The assessment, usually led by a rheumatologist or immunologist, often at a specialist centre, combines a careful history of the attack pattern with blood tests for inflammation taken during and between episodes, and genetic testing. The aim is to reach the right diagnosis, start effective treatment, and prevent a serious long-term complication called amyloidosis, where persistent inflammation damages organs such as the kidneys.

Types, options & approaches

There may be different ways to do this. The right approach depends on the clinical question and your circumstances.

Attack-pattern history

A detailed account of how often fevers occur, how long they last, what comes with them (rash, joint pain, tummy pain, chest pain, mouth ulcers, eye redness), how they start and stop, and any family history or ethnic background relevant to specific syndromes.

Inflammatory markers

Blood tests such as CRP, ESR, serum amyloid A (SAA) and white cell count, ideally measured both during an attack and when well, to show inflammation that settles and flares.

Genetic testing

Testing of genes linked to specific syndromes, for example MEFV (FMF), TNFRSF1A (TRAPS), NLRP3 (CAPS) and MVK (MKD). Results must be interpreted carefully, as not every change causes disease and some patients have no identified change.

Excluding other causes

Ruling out infections, inflammatory or autoimmune conditions, and other explanations for recurrent fever, since these are more common and need different treatment.

Checking for complications

Tests for amyloidosis where appropriate, such as checking the urine for protein and assessing kidney function, since long-standing inflammation can damage organs.

Specialist centre review

Referral to a specialist autoinflammatory or fever-syndrome service for complex or uncertain cases, including access to specialist genetic interpretation and treatments.

Recurrent infections vs autoinflammatory syndrome

Feature	Recurrent infections	Autoinflammatory
Cause	Germs (bugs)	Overactive innate immunity
Pattern	Variable, with a source	Stereotyped, recurring attacks
Between attacks	May be unwell	Usually well
Responds to	Antibiotics/antivirals	Anti-inflammatory/biologic drugs

Telling these apart matters, because autoinflammatory syndromes do not respond to antibiotics and need specific anti-inflammatory treatment.

Preparing for your test

Keep a detailed fever diary: dates, how long each episode lasts, temperatures, and symptoms that come with it.
Note how episodes start and stop, and whether you feel completely well in between.
Record family history of similar episodes, fevers, kidney problems or amyloidosis, and your ethnic background.
Try to have blood tests for inflammation taken during an attack as well as when well, if your clinician advises.
List previous tests, antibiotics tried, and any specialists already seen.
Bring a list of current medicines.
Note any eye redness, hearing changes, rashes, joint swelling or mouth ulcers during attacks.

What happens

The specialist takes a detailed history of your attacks, focusing on the pattern, duration and accompanying symptoms, and asks about family history and background. They examine you, ideally including during an attack if possible.

Blood tests for inflammation (such as CRP, ESR and SAA) are checked, ideally both during and between episodes, to confirm that inflammation flares and then settles. Other tests rule out infection and autoimmune conditions. Where an autoinflammatory syndrome is suspected, genetic testing of the relevant genes is arranged, often through a specialist laboratory.

Results come together over a few weeks. The specialist then explains whether a syndrome is likely, which one, and what it means, and discusses treatment and the need to monitor for complications such as amyloidosis. Complex or uncertain cases may be referred to a specialist fever-syndrome centre.

Is this test right for me?

A good consultation should explore whether it's the right choice for you now — including reasons to wait or consider something else.

May not be suitable if…

It is the wrong pathway for a single acute fever, which may be infection needing urgent assessment.
Genetic testing alone cannot confirm or exclude these conditions and should not be done in isolation without clinical context.
Routine, broad genetic panels are not appropriate for vague tiredness or non-specific symptoms without a suggestive attack pattern.
It does not replace urgent investigation when a serious infection or other diagnosis is possible.

Delay or rearrange if…

You are acutely unwell with a fever that could be a serious infection — this needs urgent assessment first.
Inflammation markers have only been measured between attacks, so a sample during an episode would be more useful.
Previous results or family information that would change interpretation are missing.
Another, more likely diagnosis is still being investigated.

Alternatives to discuss

Investigation and treatment of infection if that is the more likely cause of recurrent fever.
Rheumatology or immunology assessment for autoimmune or inflammatory conditions.
Watchful monitoring with a fever diary and inflammation markers if the picture is unclear.
Referral to a specialist fever-syndrome or amyloidosis centre for complex cases.
No further testing if symptoms are mild, self-limiting and not suggestive of a syndrome.

Before you decide

Use this as a shared-decision checklist. The aim is not just “can this be done?”, but whether it is right for you, now, with the risks and alternatives clearly understood.

What matters most to me?

Think about symptoms, daily life, work, caring responsibilities, sport, fertility, travel, appearance and anxiety — the right choice depends on your priorities, not just the medical facts.

What are all my options?

Ask about waiting, monitoring, medicines, rehabilitation, a smaller or larger procedure, a different test, NHS referral, or a second opinion where that would help.

What would make me pause?

Active infection, pregnancy, unstable medical problems, smoking, medicines that increase bleeding, poor support at home, or feeling pressured are all reasons to slow down and get tailored advice.

What happens if I do nothing today?

For some problems, waiting is safe; for others, delay can make treatment harder. A good consultation should explain the trade-off in plain English.

Benefits

Can identify a specific autoinflammatory syndrome and end years of uncertainty.
Distinguishes these conditions from recurrent infections, avoiding repeated unnecessary antibiotics.
Opens the door to effective, often transformative, anti-inflammatory or biologic treatment.
Allows monitoring for, and prevention of, amyloidosis and organ damage.
Provides genetic information that can inform family members where relevant.
Gives a clear plan and specialist follow-up for a long-term condition.

Risks & complications

More common

Bruising or soreness from repeated blood tests
A long wait while inflammation markers and genetic tests come together
Uncertainty if results are borderline or do not fit neatly
Frustration if no clear diagnosis is reached despite testing

Less common

A genetic change of uncertain significance, which is hard to interpret and can cause worry
Inconclusive results needing repeat testing during a future attack
Anxiety about the implications for family members

Rare but serious

Missing the diagnosis if attacks are atypical or markers are not measured during an episode
Detecting established amyloidosis or organ damage at diagnosis
A serious flare while diagnosis is still being worked out

The main pitfalls are interpretation and timing. Inflammation markers are most useful when measured during an attack, and genetic results can be ambiguous, so they must be read alongside the clinical picture by a specialist. A normal genetic test does not always rule out an autoinflammatory syndrome. The most important reason not to delay assessment is that ongoing, untreated inflammation can lead to amyloidosis, so ask about checking your kidneys and urine and about long-term monitoring.

Published figures to discuss

Autoinflammatory syndromes are uncommon and varied, and genetic results are not always clear-cut, so diagnostic yield and outcomes differ widely. The risk of complications such as amyloidosis depends on the specific condition, how well inflammation is controlled and individual factors. Because reliable, generalisable figures are limited, exact percentages are not quoted here; your specialist can give a personalised view.

Figure	Reported range	How to interpret it	Source / confidence
Monogenic periodic fever syndrome	Rare	Most recurrent fevers are infection, inflammatory disease or other common causes; genetics is targeted by pattern and ancestry.	Clinical genetic testing of periodic fever syndromes — PMCpmc.ncbi.nlm.nih.govSource-linked context
Variant of uncertain significance on genetic testing	Common practical issue as panels expand	A genetic variant is not automatically a diagnosis; the fever pattern and inflammatory markers matter.	Guide sourcesClinical context
AA amyloidosis in untreated high-risk autoinflammatory disease	Uncommon now with effective treatment, but historically important	Persistent inflammation, protein in urine or kidney decline should be taken seriously.	Clinical genetic testing of periodic fever syndromes — PMCpmc.ncbi.nlm.nih.govSource-linked context
Infection or malignancy mimicking autoinflammation	Clinically important	Weight loss, night sweats, focal symptoms or abnormal blood counts should prompt broader investigation.	Clinical genetic testing of periodic fever syndromes — PMCpmc.ncbi.nlm.nih.govSource-linked context

These are literature figures, not a personalised prediction. Your own risks and likely benefits depend on your circumstances, your health, and how your care is carried out and followed up.

What happens afterwards

There is no physical recovery from the assessment. “Afterwards” means combining results over a few weeks and agreeing a diagnosis, treatment and monitoring plan.

First appointment

Detailed history, examination and initial inflammation blood tests. You may be asked to have bloods taken during a future attack.

Days to weeks

Genetic tests and further bloods are processed, often through a specialist laboratory, which can take several weeks.

Results appointment

The specialist explains whether an autoinflammatory syndrome is likely, which one, and what it means, and discusses treatment.

Ongoing

A treatment plan is started where appropriate, with monitoring of inflammation and checks for complications such as amyloidosis.

What's normal — and not a worry

Mild bruising at blood-test sites
Continuing to have attacks until effective treatment is started
A wait of several weeks for genetic results
Mixed feelings while results are awaited, especially with a family history

Aftercare

Keep your fever diary going, as it helps confirm the pattern and judge treatment.
Have blood tests for inflammation taken during attacks if asked.
Take any prescribed treatment as directed and report side effects.
Attend monitoring appointments, including urine and kidney checks for amyloidosis.
Tell other clinicians about your diagnosis so attacks are not mistaken for infection.
Share relevant genetic information with family if advised, with support from the team.
Keep copies of your results, including genetic reports.

Before your test

Detailed fever and symptom diary
Record of episode duration, temperatures and associated symptoms
Family history and ethnic background noted
Previous test results and antibiotics tried gathered
Current medicines list
Plan for blood tests during the next attack
Questions about amyloidosis monitoring and family testing

⚠ Get urgent help if…

A very high fever with severe headache, neck stiffness, drowsiness or a non-fading rash — seek emergency care, as serious infection must be ruled out
Severe, persistent abdominal pain different from your usual attacks
Breathlessness or chest pain that is new or severe
Swelling of the legs, frothy urine or a drop in how much you pass (possible kidney involvement)
Foam in the urine or new ankle swelling, which can suggest amyloidosis
An attack that is unusually severe, prolonged or different from your normal pattern

Who to contact: your clinician, clinic or test provider first (keep their number to hand). For urgent advice when you can't reach them, call NHS 111. In an emergency, call 999.

General guidance — it doesn't replace the specific advice your specialist gives you.

Results & realistic expectations

A clear result means the specialist can say whether an autoinflammatory syndrome is likely, often name it, and start the right treatment. Diagnosis usually rests on a typical attack pattern plus evidence of inflammation that flares and settles, supported, but not always confirmed, by genetics.

Results are not always clear-cut. A genetic change may be found that does not fully explain the picture, or genetic tests may be normal even when a syndrome is present. In these cases the diagnosis is made on the overall clinical picture and response to treatment. The assessment cannot predict exactly when attacks will occur, but it can guide treatment to control them and protect your organs.

How long it lasts

Autoinflammatory syndromes are usually lifelong, though their pattern can change over time and treatment can greatly reduce or stop attacks. The key long-term goal is to control inflammation well enough to prevent amyloidosis and organ damage. Diagnoses and treatment plans are reviewed over time, and genetic results may be reinterpreted as knowledge advances.

Related tests, treatments or support

Assessment is combined with tests to exclude infection and autoimmune disease, and with checks for complications such as amyloidosis (urine protein and kidney function). Inflammation markers and genetic testing are interpreted together. Where amyloidosis is suspected, specialist tests and centres, such as a national amyloidosis service, may be involved.

Follow-up & long-term care

You should be told your results and given a clear explanation, a treatment plan where appropriate, and a monitoring plan that includes checking for amyloidosis. Complex cases are often followed up at a specialist fever-syndrome or rheumatology centre. Follow-up tracks inflammation control, treatment side effects and organ health, and reviews the diagnosis if the picture changes.

Continue regular monitoring of inflammation markers and kidney/urine checks for amyloidosis.
Keep taking and reviewing any preventive treatment, such as colchicine or a biologic, as advised.
Maintain your fever diary to judge how well attacks are controlled.
Review the diagnosis and genetic results over time as understanding evolves.
Update other clinicians so attacks are not treated as infections.
Discuss family testing where a clear inherited cause is identified.

Repeat, follow-on and what comes next

Diagnosis can take time and may need repeat inflammation tests during future attacks.
Genetic results may be uncertain and can be reinterpreted as knowledge advances.
A working diagnosis may be revised if the attack pattern or response to treatment changes.
Treatment is often adjusted or escalated until inflammation is well controlled.

Ask what happens if the result is unclear or needs repeating, and what is included if further tests or follow-up are needed.

What good aftercare looks like

A clear written diagnosis or explanation, with the specific syndrome where identified.
A treatment plan aimed at controlling inflammation and preventing amyloidosis.
Regular monitoring of inflammation markers, kidney function and urine.
Access to a specialist centre for complex cases and specialist genetic interpretation.
Support and clear information for family testing where an inherited cause is found.

What affects the cost

Costs vary a great deal between people and providers, and we don't publish prices. What matters is understanding what drives the cost and making sure your quote is complete. The main things that affect it:

The length and complexity of the specialist consultation
How many blood tests for inflammation are needed, including during attacks
Genetic testing, which can be expensive and may use specialist laboratories
Tests to exclude infection and autoimmune disease
Checks and monitoring for amyloidosis and organ involvement
Follow-up appointments and any referral to a specialist centre

Make sure your written quote includes

The specialist consultation fee
Which blood and genetic tests are planned and their cost
Whether testing during an attack is included
Monitoring tests for amyloidosis and kidney function
Follow-up appointments to review results and treatment
How and when results, including genetic reports, will be explained to you
What happens, and what it costs, if results are inconclusive or further testing is needed

On the NHS? Assessment for autoinflammatory and periodic fever syndromes is available on the NHS when clinically indicated, often through rheumatology, immunology or specialist fever-syndrome centres; private assessment may be used for faster access or a specialist opinion.

You're entitled to your total cost in writing — including reports, follow-up and what happens if the result is inconclusive — before you decide.

Choosing a specialist safely

Check the specialist is on the GMC Specialist Register for this area.
Make sure they work at a CQC-registered service, and look for membership of the relevant Royal College or professional body.
You're entitled to time to consider and to have your questions answered before you agree — the specialist who looks after you should explain it, not a salesperson.
Be wary of pressure: time-limited offers or deposits taken before you've had time to think are red flags, not bargains.
You're entitled to your total cost in writing — including any follow-up — before you decide.

How Vuemedics verifies every consultant →

Questions to ask your medical professional

Take this to your consultation. A good specialist will welcome every one of these.

Could my fevers be an autoinflammatory syndrome rather than infections, and which one are you considering?
Should my inflammation markers be measured during an attack?
What does my genetic result mean, and what if it is normal or uncertain?
How will you check for amyloidosis and protect my kidneys?
What treatment might I need, and how will we know it is working?
Should my family be tested, and should I be seen at a specialist centre?
Are you on the GMC Specialist Register for this area, and which Royal College or professional body are you a member of?
Will you be the specialist who carries out my test, and who looks after me afterwards?
What are the risks for someone like me, and how often do your own patients have a problem or need it repeated or redone?
What does a realistic result look like — and what can this test not achieve?
What are my options, including waiting, doing nothing for now, or choosing a different approach?
Can I have written information, results and aftercare instructions in a format I can use, including any accessibility or communication support I need?
What is the total cost in writing, including any follow-ups, and how much time do I have to decide?

Frequently asked questions

How is this different from getting a lot of infections?

Autoinflammatory syndromes are not caused by germs and do not respond to antibiotics. The attacks tend to follow a set pattern, often with rashes, joint or tummy pains, and people are usually well in between. Telling them apart from recurrent infections is a key part of the assessment.

Does a normal genetic test rule it out?

Not always. Some people have a clear autoinflammatory syndrome without an identified gene change, and some gene changes are of uncertain significance. Diagnosis depends on the whole picture, including the attack pattern and inflammation markers, not genetics alone.

What is amyloidosis and why does it matter?

Amyloidosis is a serious complication where long-standing inflammation leads to a protein building up in organs such as the kidneys, causing damage. Controlling inflammation helps prevent it, which is one of the main reasons to diagnose and treat these conditions properly.

Why do I need blood tests during an attack?

Inflammation markers are most informative when measured during an episode, because they should be raised then and settle in between. This pattern helps confirm an autoinflammatory process.

Is this assessment available on the NHS?

Yes, when clinically indicated, often through rheumatology or immunology services and, for complex cases, specialist fever-syndrome centres. It can also be done privately, often for faster access or a specialist opinion.

Could my children be affected?

Some of these conditions are inherited, so family members can be affected. If a clear genetic cause is found, the team can discuss what this means for relatives and arrange testing or counselling where appropriate.

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How we made this page

Medically reviewed by a GMC-registered consultant. Written in plain English, checked against NHS, NICE, GMC and relevant Royal College / specialist-society guidance, and kept under review. No clinic paid to appear on this page, and we publish no pricing. This is general information to help you prepare — it is not a substitute for advice from your own clinician. How we review our guides →

Source hierarchy: UK regulator and NHS/NICE guidance first, then relevant Royal College or specialist-society guidance, then peer-reviewed evidence for procedure-specific figures where available.

Sources & standards: PRINTO (paediatric rheumatology) — Familial Mediterranean Fever PRINTO — Cryopyrin-Associated Periodic Syndromes (CAPS) PRINTO — TNF Receptor-Associated Periodic Syndrome (TRAPS) UCLH — National Amyloidosis Centre Clinical genetic testing of periodic fever syndromes — PMC Genetic profiling of autoinflammatory disorders in periodic fever — PMC

Reviews reflect patients' experience of care, not clinical outcomes. For procedure volumes and outcome data see PHIN.

Last medically reviewed 2026-09-21. Spotted something wrong or out of date? Report an error in this guide.