🧠 Understanding Health Evidence: A Guide for Patients

This guide helps patients and the public understand how to judge the quality of health information, especially around treatments, supplements, and medical claims.

📚 Menu

  1. How Science Works
  2. Assessing the Strength of Evidence
  3. Trusting Online Medical Information
  4. Scientific Journal Quality and Bias
  5. Herbal Remedies and Industry Influence
  6. Unrecognised Syndromes and Clinics
  7. Predatory Journals and Peer Review

🔬 How Science Works

Medical advice and treatments are ideally based on well-tested science. Here’s how that process usually works:

  1. Research is done by scientists who ask questions and collect data.
  2. Peer review: Experts examine the study to ensure it’s fair and thorough.
  3. Publication: If it passes peer review, it's published.
  4. Replication: Other researchers try to repeat it. If they can't, confidence in the findings drops.

One study rarely proves something on its own. Medical certainty comes when multiple high-quality studies agree.

📊 Assessing the Strength of Evidence

🔎 Use these steps to check whether a claim is solid or uncertain:

  • Is it based on one study or a pattern of studies?
  • Has the result been replicated by others?
  • Is it a randomised controlled trial, or a weaker type (like a case report)?
  • Does it appear in a systematic review or meta-analysis?
  • Was it published in a known, peer-reviewed journal?

Always check with a trusted clinician if unsure.

🌐 Trusting Online Medical Information

Look out for:

✅ NHS, NICE, university, or respected charity sources ✅ References to studies or expert guidelines ✅ Recently published or reviewed content ❌ Claims that sound too good to be true ❌ Articles trying to sell you something

Good places to check information:

🧾 Scientific Journal Quality and Bias

Even good journals may publish studies with industry funding. That’s not wrong by itself, but look out for signs of bias:

  • Conflict of interest statements (often near the beginning or end)
  • Funding sources: Drug companies vs. independent organisations
  • How results are framed: Are benefits overstated? Risks ignored?
  • Compare with other studies: Are the results too good to be true?

The strongest evidence comes from independent replication.

🌿 Herbal Remedies and Industry Influence

Some believe herbal treatments are suppressed by drug companies. In truth:

  • Most herbal products haven’t had large, well-run trials.
  • Companies don’t fund them because they can’t be patented.
  • It’s not suppression — it’s a lack of commercial incentive.

Even if early research looks good, we need repeatable, well-controlled studies to ensure safety and effectiveness.

Doctors can’t recommend unproven treatments — not because they don’t work, but because we don’t yet know enough.

⚠️ Unrecognised Syndromes and Clinics

Some private clinics promote treatments for self-defined syndromes. They often:

  • Rely on a few early or small studies
  • Use unrecognised diagnostic tools
  • Sell unproven or expensive treatments

Mainstream medicine needs strong, repeated evidence before accepting a new condition or treatment. It’s about safety and evidence, not disbelief or conspiracy.

⚖️ Is It Legal — and Ethical?

In many countries, including the UK, it is legal for clinics to offer non-mainstream treatments if they do not break safety, advertising, or professional conduct laws. However, legality does not always mean ethical acceptability.

Offering treatments that are unsupported by high-quality evidence may be seen by many as amoral or unethical, especially when:

  • Patients are vulnerable or desperate
  • Treatments are expensive
  • Claims are overstated or misleading
  • Alternatives with better evidence are not discussed

Healthcare professionals are expected to put patient welfare before profit, be transparent about evidence limitations, and avoid offering false hope. Patients should always ask questions, seek second opinions, and verify claims with trusted sources.

Some private clinics promote treatments for self-defined syndromes.

They often:

  • Rely on a few early or small studies
  • Use unrecognised diagnostic tools
  • Sell unproven or expensive treatments

Mainstream medicine needs strong, repeated evidence before accepting a new condition or treatment. It’s about safety and evidence, not disbelief or conspiracy.

Other examples of self-defined or poorly validated syndromes promoted by certain clinics include:

  • Adrenal fatigue (not the same as adrenal insufficiency)
  • Leaky gut syndrome (distinct from recognised intestinal permeability disorders)
  • Multiple chemical sensitivity (MCS)
  • Chronic Lyme disease (as distinct from recognised post-treatment Lyme syndrome)
  • Sick building syndrome (& similar relating to treating those in a damp home)

These conditions are often treated with:

  • Specialised tests with unclear scientific validity
  • Supplements, detox regimes, or off-label drug use
  • Expensive personalised programmes with limited oversight

📉 Predatory Journals and Peer Review

Some journals publish low-quality or unreviewed research for money. Warning signs:

❌ Generic names, vague editorial boards, fast publication ✅ Indexed in PubMed, Web of Science, or Scopus ✅ Member of COPE or listed in DOAJ

Peer-reviewed journals differ in quality. Just because something is published doesn’t mean it’s reliable.

 

by GAtherton

💊 How Medicines Are Approved — and What “Off-Label” Means

🔹 1. What Is “Licensed” or “Approved” Medication Use?

Before a medicine can be prescribed in the UK (or any country), it goes through a formal approval process:

Step What Happens
Clinical trials The medicine is tested for safety, effectiveness, and quality.
Regulatory review In the UK, the Medicines and Healthcare products Regulatory Agency (MHRA) or the European Medicines Agency (EMA) reviews trial data.
Marketing authorisation If approved, the medicine is “licensed” for specific conditions, doses, age groups, and methods of use.

🟢 A licensed use means the drug has been judged safe and effective for that specific use, based on strong clinical evidence.

🔹 2. What Is “Off-Label” Use?

Off-label use means a doctor prescribes a medicine in a way that is not covered by its official license.

This could include:

  • Using a medicine for a different condition

  • Giving it at a different dose or frequency

  • Using a different route (e.g. inhaled instead of injected)

  • Giving it to a different age group (e.g. in children)

This is legal, but it means the prescriber is using their clinical judgement outside the official licensing terms.

🔹 3. Why Might a Doctor Use a Medicine Off-Label?

Reason Example
There is no licensed treatment for a rare condition e.g. inhaled amphotericin B for CPA or ABPA
The licensed treatment doesn’t work or causes side effects e.g. switching antifungal drugs
New evidence supports another use, but the company hasn’t applied for a new licence e.g. old drugs used in new ways based on research
Medicines used in children or elderly often lack specific licensing data

🔹 4. Is Off-Label Use Safe?

It can be, but it requires:

  • Good clinical judgement

  • Use of the best available evidence

  • Often, discussion with a multidisciplinary team

  • Informed consent from the patient (especially important in high-risk cases)

The prescriber takes more responsibility, because the use hasn’t been formally approved by regulators.

🔹 5. Who Oversees This in the UK?

  • The MHRA licenses medicines.

  • The General Medical Council (GMC) and NHS allow doctors to prescribe off-label when it’s in the patient’s best interest.

  • NICE guidelines sometimes include off-label use if evidence supports it.

🔹 6. Real-World Example: Inhaled Amphotericin

  • Licensed: Amphotericin B is approved for injection to treat fungal infections.

  • Off-label: Nebulised (inhaled) use is not officially licensed, but it is used in some centres to treat or prevent fungal lung disease (e.g. CPA, ABPA) where evidence and specialist experience supports it.

🔹 Summary: Key Points

Term Meaning
Licensed use The use of a medicine that has been approved for a specific purpose by a regulator.
Off-label use Prescribing a medicine in a different way than officially licensed — legal, but used with clinical caution.
Who decides? Ultimately, the prescribing clinician, supported by evidence, guidance, and the needs of the individual patient.

by GAtherton

Managing Life with Haemoptysis

Managing life with haemoptysis — especially when it's recurrent, low-volume, or threatening to recur — can be physically and emotionally exhausting. Whether due to CPA, ABPA, bronchiectasis, aspergillus bronchitis, or other underlying lung conditions, the goal is to minimise triggers, support healing, and maintain safety without living in constant fear.

Here’s a comprehensive, practical guide to managing haemoptysis during recovery or periods of fragility:

🔴 Understanding the Risk

Haemoptysis (coughing up blood) can range from:

  • Minor (streaks in mucus)

  • Moderate (5–50ml)

  • Massive or life-threatening (>200–600ml in 24h — a medical emergency)

If you're in a recovery phase, you may be:

  • Post-bleed but still inflamed

  • Dealing with recurrent trickles

  • Worried about provoking a bleed due to fragile blood vessels or fungal activity

✅ Core Management Goals

Goal How to Achieve It
Prevent rebleeding Avoid straining, irritating airways, or increasing pressure
Allow fragile vessels to heal Stay well-hydrated, avoid airway trauma, reduce inflammation or infection
Identify and treat causes Maintain antifungal, antibiotic or anti-inflammatory treatment as prescribed
Stay calm during symptoms Know how to position yourself and who to contact
Keep life going gently Pace activity, prioritise rest, manage anxiety without isolation

🔹 1. Activity & Positioning: How to Move Safely

  • Avoid intense exercise, heavy lifting, straining (including on the toilet).

  • Keep your head elevated when sleeping (2 pillows or wedge).

  • If coughing blood:

    • Sit upright or lean slightly forward (don’t lie flat).

    • Lie on the side that’s bleeding (if known) — this protects the better lung.

🔹 2. Breath & Cough Management

  • Cough suppression may help reduce vessel trauma:

    • Use warm steam or gentle hydration first.

    • Use prescribed suppressants only if safe (some conditions need mucus clearance).

  • Huffing can be gentler than coughing.

  • Avoid dry air — use a humidifier, nasal rinses, or saltwater gargles.

🔹 3. Medication Adherence

  • Antifungals (e.g., voriconazole, itraconazole): Maintain strict levels.

  • Steroids (if prescribed): Taper cautiously under supervision.

  • Antibiotics or macrolides: Prevent secondary infection.

  • Tranexamic acid: Sometimes used short-term to reduce bleeding risk (under guidance).

🔹 4. Environmental & Lifestyle Support

  • Avoid dust, smoke, aerosols, strong odours, and temperature extremes.

  • Wear a mask when gardening, cleaning, or in crowded spaces.

  • Avoid alcohol and anti-inflammatory meds (NSAIDs) unless cleared.

  • Maintain gentle hydration, warm teas, and soothing soups to support healing.

🔹 5. Psychological Support: Managing Fear and Anxiety

  • It’s normal to fear rebleeding — but hypervigilance can increase stress and airway irritation.

  • Use mindfulness or grounding during panic (see above).

  • Talk with a support group or therapist if fear is affecting sleep or daily life.

  • Ask for a written plan from your medical team: “What to do if it happens again.”

🔹 6. When to Seek Help

Call your medical team or go to A&E if:

  • Bleeding increases or becomes bright red and continuous

  • You cough up >1 tablespoon of blood

  • You feel faint, breathless, or distressed

  • Blood is mixed with froth, or you feel it rising in your throat

📦 Preparedness Tips

  • Keep a rescue plan printed or saved on your phone.

  • Store clean cloths or tissues, bottled water, and calming items near where you rest.

  • Carry a medical ID or information card if you’re going out alone.

🧘‍♀️ Living Well While Letting It Heal

  • Maintain light, slow routines – a little movement, some fresh air, safe distraction.

  • Avoid cough triggers like strong smells or cold air.

  • Use the time to focus on recovery, build strength gradually, and connect with others.

by GAtherton

Visual Disturbances on Voriconazole: What’s Happening and Why It Can Feel So Scary

If you're experiencing frightening or panicked feelings due to visual disturbances while taking voriconazole, you're not alone — and there are reasons behind both the symptoms and your emotional response.

🧠 What Causes Visual Disturbances with Voriconazole?

  • Voriconazole crosses the blood–brain barrier and affects the central nervous system (CNS).

  • It interacts with retinal photoreceptors (especially rods), which may explain:

    • Lights seeming too bright or flickering.

    • Halos, flashes, or color distortions.

    • Visual “trails” following movement.

  • Although not fully understood, it may involve:

    • Temporary interference with visual signal processing in the brain and retina.

    • Altered neurotransmitter activity or enhanced retinal light sensitivity.

⏱️ When Do These Disturbances Happen and How Long Do They Last?

  • Onset: Symptoms typically begin 30 minutes to 2 hours after a dose.

  • Duration: They usually last 2 to 6 hours, fading as the drug is processed.

  • Resolution: Most people find the effects wear off before the next dose.

  • Over time, even if you stay on the drug, your body often adapts, and the symptoms lessen or disappear entirely within a few days to weeks.

😰 Why Do They Feel So Scary?

  • The effects are sudden and intense, often catching people off guard.

  • Our brains rely on visual input for safety — when this gets disrupted, it can trigger anxiety or panic.

  • If you live with anxiety or take other medications, your brain may amplify the sense of threat, even though the effect is temporary.

  • Descriptions like “psychedelic” or “derealised” are common — which understandably causes distress.

🩺 What Can You Do?

  1. Talk to your medical team. They may:

    • Check voriconazole blood levels.

    • Reduce the dose or change timing.

    • Switch to an alternative antifungal if needed.

  2. Avoid driving at night or doing visually demanding tasks until things settle.

  3. If anxiety is a problem:

    • Try grounding techniques (e.g. breath control, sound orientation).

    • Ask your doctor whether temporary support (like anti-anxiety medication or CBT) might help.

  4. Some patients find taking voriconazole in the evening lets them sleep through the worst of it — but check this with your prescriber first.

🔔 When to Get Urgent Help

If symptoms last unusually long, worsen over time, or include confusion, agitation, or hallucinations, contact your healthcare provider. These may be signs of CNS toxicity, especially if blood levels are high.

by GAtherton

🧠 Why Some Medications Can't Be Prescribed by GPs

In the UK, the NHS uses a tiered prescribing system that sometimes prevents GPs from prescribing certain medications, even if those medicines are available elsewhere in the NHS.

Here’s a clear explanation of how and why this happens:

🔒 1. Shared Care or Specialist-Only Medications

Some medicines are designated as “specialist-only” or “shared care” treatments. This means:

  • GPs are not authorised to initiate them.

  • In some cases, they can continue a prescription once a specialist starts it — but only if a formal shared care agreement is in place.

Examples include:

  • Biologics for asthma, ABPA, or autoimmune disease

  • High-risk antifungals like voriconazole or posaconazole

  • Certain cancer, transplant, or hormone drugs

This system ensures that:

  • The medication is closely monitored by someone with specialist knowledge

  • Risks like interactions, side effects, and required blood tests are safely managed

📜 2. Local Prescribing Formularies

Each NHS Integrated Care Board (ICB) or local NHS Trust maintains a formulary — a list of medicines approved for use in that area.

  • If a medicine isn't on the local formulary, the GP may be unable to prescribe it, even if NICE (the National Institute for Health and Care Excellence) says it's effective.

  • These decisions are based on local budget priorities, agreements with hospitals, and clinical capacity.

💷 3. Cost Controls and Prior Approvals

Some medications are expensive or highly specialised, and require:

  • Prior approval by a funding panel

  • A hospital-based consultant to apply for and justify the treatment

GPs usually cannot access these approval pathways directly.

⚠️ 4. Liability and Risk

Even if a GP understands the condition, they may not have:

  • Access to monitoring protocols

  • Up-to-date knowledge of rare drug interactions or side effects

  • The ability to interpret complex blood results needed for safe prescribing

For legal and safety reasons, GPs must follow guidance from their local ICB or NHS England on what they can and can’t prescribe.

✅ What Patients Can Do

  • Ask the hospital team if the medication can be prescribed under shared care, and whether your GP has agreed to it.

  • Ask your GP to request guidance from the local medicines management team.

  • Request a hospital prescription if urgent — but note this often requires collection from hospital pharmacies.

by GAtherton

🌱 Safe Handling of Plants, Compost, and Soil for People with CPA

If you work with flowers, compost, mulch, or soil—as many people with CPA (chronic pulmonary aspergillosis) do—you’re regularly exposed to Aspergillus spores. Some of these may be resistant to antifungal medications, making workplace precautions even more important.

🧫 Why It's a Concern

  • Widespread Azole Fungicide Use: Agricultural fungicides share chemical similarities with medical antifungal drugs (like itraconazole and voriconazole), leading to resistant strains of Aspergillus fumigatus in the environment.

  • Environmental Reservoirs: Garden centres, compost heaps, potting sheds, and greenhouses can all harbor resistant spores.

  • Clinical Risk: If resistant spores are inhaled and cause infection, treatment becomes more difficult, requiring second-line drugs that may be less effective or more toxic.

✅ How You Can Protect Yourself While Staying on the Job

You don’t have to give up the work you love. With smart precautions and awareness, you can continue safely:

🛡️ Protect Yourself from Airborne Spores

  • Wear a certified FFP2, FFP3, or N95 mask (not a surgical or cloth mask).

  • Avoid opening compost bags or disturbing dry materials indoors.

  • Prioritise outdoor tasks or ensure good ventilation in work areas.

🧤 Glove Up and Gear Down

  • Use gloves when handling compost, soil, or mulch.

  • Change clothes after work and shower to remove spores from your skin and hair.

  • Keep work footwear separate from household shoes.

🧼 Wash Hands Frequently

  • Always wash your hands:

    • After handling compost, soil, or cut plants

    • After removing gloves or masks

    • Before eating or drinking

  • Use soap and warm water for at least 20 seconds. If unavailable, use hand sanitiser (minimum 60% alcohol).

🧼 Why Hand Hygiene Really Matters with CPA

Even though Aspergillus is primarily inhaled, clean hands help reduce accidental transfer of spores to your face, nose, and mouth. Here's why hand hygiene is especially important for people with CPA:

  • Reduces risk of transferring spores from contaminated surfaces or tools to your face.

  • Prevents secondary infections from viruses or bacteria, which are harder to fight with weakened lungs.

  • Supports immune safety if you’re taking antifungals, steroids, or immunosuppressants.

🔬 Stay on Top of Health Monitoring

  • Tell your respiratory team about your occupational exposure.

  • If your symptoms change or your antifungal treatment stops working, request resistance testing (not always automatic).

  • Keep up with routine blood tests, scans, and sputum cultures.

🌍 The Bigger Picture

Antifungal resistance in the environment is rising across the UK and Europe. Garden centres and plant-heavy environments are now recognised as higher-risk zones for people with CPA. But with protective equipment, hygiene routines, and regular monitoring, it's entirely possible to keep working safely—especially when your job brings purpose and joy.

by GAtherton

🟦 Key Patient Advice for Starting Voriconazole

When starting voriconazole for the first time, it's important to provide clear, practical, and safety-focused information. Here's what a patient should be told:

1. How to Take It:

  • Take voriconazole on an empty stomach — at least 1 hour before or 1 hour after food.

  • Take it exactly as prescribed — usually twice daily at regular times.

  • Don’t stop suddenly unless advised.

2. Common Side Effects to Watch For:

  • Visual disturbances (blurry vision, changes in color or brightness) — often early on and usually temporary.

  • Photosensitivity (sunburn easily) — wear sunscreen and protective clothing.

  • Nausea or upset stomach

  • Skin rashes — report any rash, as rare serious reactions can occur.

  • Liver irritation — signs include dark urine, yellowing of skin/eyes, or upper right abdominal pain.

3. Serious Side Effects – Report Immediately:

  • Visual symptoms that worsen or don’t go away

  • Severe rash or peeling skin

  • Confusion, hallucinations, or tremors

  • Signs of liver trouble (yellow eyes, dark urine, pale stools)

4. Blood Monitoring Needed:

  • Liver function tests (LFTs) are usually checked before treatment and regularly during treatment.

  • Blood levels of voriconazole may also be monitored, especially if:

    • You're not responding

    • Side effects occur

    • You're on other medications that interact

5. Medication Interactions:

Voriconazole interacts with many drugs including:

  • Steroids (may increase steroid levels)

  • Warfarin, statins, some diabetes medications

  • Proton pump inhibitors (like omeprazole)

  • Some heart or seizure drugs

Always tell your doctor or pharmacist about all medications and supplements.

6. Driving and Activities:

  • Avoid driving or operating machinery if you have visual symptoms or feel dizzy.

7. Alcohol and Grapefruit:

  • Avoid or limit alcohol, as it may increase side effects.

  • Avoid grapefruit — it can affect how voriconazole is processed.

by GAtherton

Considering Complementary or Alternative Therapies? Here's What You Need to Know

Outside of intensive care units, aspergillosis is usually a chronic disease that is lifelong. It can be difficult to keep a consistent quality of life while being treated for Chronic Pulmonary Aspergillosis (CPA) or Allergic Bronchopulmonary Aspergillosis (ABPA) as the medications used are powerful with potential for causing side effects and interfering with some of your other medications. Understandably, many longer-term patients look for more answers from unconventional complementary or alternative medicine practitioners, so how can we help them do that safely? This article sets out to help:

Introduction. Many people living with chronic illness, pain, fatigue, or breathing issues turn to complementary therapies to feel better, reduce side effects, and support their overall well-being. This guide will help you make safe, informed choices if you're thinking about including complementary approaches alongside your usual medical care.

What Are Complementary Therapies? Complementary therapies are treatments used alongside your usual medical care. They are different from "alternative therapies," which are used instead of conventional medicine. When used correctly, complementary therapies can help improve quality of life, reduce symptoms, and support emotional well-being.

Examples include:

  • Meditation and mindfulness
  • Nutritional therapy
  • Gentle movement (like yoga, tai chi)
  • Acupuncture
  • Massage therapy
  • Herbal supplements

Is There Any Evidence They Work? Some complementary therapies have been studied and show real benefits:

  • Mind-body practices (like breathing exercises, meditation, and CBT) are proven to help with anxiety, breathlessness, and chronic pain.
  • Nutrition and anti-inflammatory diets (like the Mediterranean diet) support overall health and reduce inflammation.
  • Acupuncture may help some people with pain, nausea, or fatigue.
  • Certain supplements (like vitamin D, magnesium, and omega-3s) are helpful if you have a deficiency.

Not all therapies have strong evidence. Some can be expensive or unnecessary. It's important to talk to your healthcare team and do your research.

How to Use Complementary Therapies Safely

  1. Always tell your doctor or nurse about any therapies, supplements, or herbal products you're using.
  2. Don’t stop prescribed treatments unless your doctor agrees.
  3. Choose qualified practitioners who are registered with a professional body (like CNHC, BAcC, or HCPC).
  4. Start slowly and track your symptoms.
  5. Use trusted sources for health information (NHS, hospital websites, academic studies).

Questions to Ask Before Trying a New Therapy

  • What are you hoping this therapy will help with?
  • Is there scientific evidence to support it?
  • What are the risks or side effects?
  • Is the practitioner qualified and insured?
  • Could it interfere with my medications or condition?

Examples of Safe and Evidence-Based Complementary Therapies

Goal Therapy Evidence Level
Reduce anxiety or breathlessness Mindfulness, breathing physio Strong
Support joint and muscle pain Tai chi, massage, acupuncture Moderate
Improve energy and wellbeing Nutrition support, yoga Moderate to strong
Manage inflammation Anti-inflammatory diet, omega-3s Strong


Considering Alternative Therapies? What You Should Know

Alternative therapies are treatments that are used instead of conventional medical care. Some people turn to them out of frustration, fear of side effects, or belief in more “natural” healing methods.

While some approaches may seem appealing, it's important to understand the risks, limitations, and lack of regulation that often surround alternative therapies.

What Counts as an Alternative Therapy? Common examples include:

  • Using only herbal remedies or detoxes instead of prescribed medications
  • Rejecting chemotherapy or antibiotics for serious illness
  • Relying on homeopathy for infections or chronic disease
  • Unregulated “energy healing” or “cleanses” with no scientific backing

Risks of Using Alternative Therapies Instead Of Medical Care

Risk Why It Matters
Delayed treatment Can allow serious conditions to worsen (e.g., cancer, infection, asthma flare)
Interactions with meds Herbs and supplements can interfere with prescription drugs
False claims Some therapies promise cures with no proof, wasting time and money
Unregulated practitioners No licensing means anyone can offer therapy with no safety checks

What Does the Evidence Say?

  • Homeopathy: Consistently shown to perform no better than placebo in high-quality studies.
  • “Detox” treatments: Most are not evidence-based; your liver and kidneys already detox your body.
  • Raw food or extreme diets: Can lead to malnutrition or worsen chronic illness.
  • Anti-vaccine or anti-medical ideologies: Can be harmful and undermine public health.

Some alternative therapies have spiritual or emotional value, but they should not replace evidence-based treatment for serious health conditions.

Why Do Alternative Practitioners Offer These Treatments? Not all alternative practitioners are motivated by money. Many genuinely believe in the value of their approach, often drawing on personal experiences or longstanding traditions. Their justifications may include:

  • A belief in the body's natural ability to heal itself
  • Disappointment with conventional medicine's limits
  • Cultural or spiritual views of illness and healing
  • A desire to offer more time, empathy, or individualised care

That said, it’s also true that some providers operate in unregulated markets and may promote costly or unproven treatments. Patients should stay informed, ask critical questions, and seek practitioners who work ethically and transparently.

Safer Ways to Explore Holistic Health If you’re drawn to alternative ideas because you want:

  • Fewer medications
  • More control
  • A natural approach
  • Better quality of life

Talk to your doctor or nurse about complementary options that are safe, evidence-based, and compatible with your condition.

Final Thoughts Complementary therapies can be a valuable part of your health journey when used wisely. They are not a replacement for medical treatment, but they can complement it beautifully. Stay informed, ask questions, and work with your healthcare team to find what works best for you.

Want to know more? Talk to your GP, specialist nurse, or physiotherapist about safe ways to explore complementary care. They may also be able to refer you to trusted practitioners.
Read NHS Complementary and Alternative Medicine

by GAtherton

When to Speak Up About Side Effects

For patients and carers managing aspergillosis treatment

Why this matters

Treatment for aspergillosis is often long-term and involves medications that can affect people in different ways. It's important to know that you don’t have to suffer in silence. Recognising side effects early and reporting them can help you stay well and improve your quality of life.

Medications commonly used in aspergillosis

Antifungals
Voriconazole, Posaconazole, Itraconazole, Isavuconazole

Steroids
Prednisolone (oral), Inhaled corticosteroids

Biologic therapies
Omalizumab (anti-IgE), Mepolizumab/Benralizumab (anti-IL-5), Dupilumab (anti-IL-4/IL-13)

What to watch for

Note: These side effects range from common to rare. Most people do not experience all of them, but it's important to be aware of what might occur. If you’re unsure whether a symptom is related to your medication, always ask.

Cardiac side effects (uncommon to rare, but important to report)

  • Palpitations (racing or irregular heartbeat)
  • Dizziness or fainting
  • Swelling in the legs or ankles
  • Chest pain or tightness
  • Changes in blood pressure or heart rhythm (QT prolongation) (can occur with antifungals or steroids)
  • Palpitations (racing or irregular heartbeat)
  • Dizziness or fainting
  • Swelling in the legs or ankles
  • Chest pain or tightness
  • Changes in blood pressure or heart rhythm (QT prolongation)

Let your healthcare team know if you have a history of heart conditions, or experience any of these symptoms during treatment.

Antifungal side effects (common to occasional)

  • Skin rash, burning, or sun sensitivity, even indoors (through windows or from reflected light)
  • Visual changes (blurred vision, colour distortion, photophobia)
  • Liver enzyme abnormalities (can show up on blood tests)
  • Nausea, abdominal discomfort, or taste changes
  • Hallucinations, anxiety, or confusion (rare but serious — seek help immediately)

Steroid side effects (common with long-term use)

  • Mood swings, anxiety, or irritability
  • Insomnia or restlessness
  • Increased appetite or weight gain
  • High blood sugar, especially if diabetic
  • Bone thinning (osteoporosis) over time
  • Skin thinning, easy bruising, or delayed healing
  • Eye pressure/glaucoma or cataracts (with long-term use)

Biologic side effects (generally well-tolerated; uncommon side effects listed below)

  • Localised reactions at the injection site (pain, swelling, redness)
  • Headache, fatigue, or low-grade fever
  • Worsening eye symptoms, especially with dupilumab (e.g. dry eyes, redness)
  • Rare: allergic reactions or increased infection risk (let your team know if you’re feeling unwell after a dose)

When to get in touch

You should contact your care team if:

  • A side effect is persistent, worsening, or interfering with your daily life
  • You notice any mental health changes (anxiety, low mood, agitation)
  • You feel dizzy, unwell, or unable to tolerate food or fluids
  • There are signs of infection (e.g. fever, cough, chills, pain)
  • You are unsure whether what you’re feeling is a side effect or something else

You're not being a nuisance

Asking questions or raising concerns is part of staying safe. Medications can usually be adjusted, paused, or switched — but your team needs to know how you’re feeling to make those decisions. You are an expert in your own experience.

Tip: Keep a side effect diary

  • Note any changes in sleep, mood, appetite, skin, or digestion
  • Bring this with you to appointments
  • If helpful, ask a family member or friend to help observe changes

by GAtherton

Voriconazole and Sun Sensitivity

People taking voriconazole need to be very cautious in the sun because this antifungal can cause photosensitivity reactions—meaning the skin becomes more sensitive to sunlight, even through glass or on cloudy days. This can lead to severe sunburn, skin blistering, and long-term damage, including premalignant and malignant skin changes (like squamous cell carcinoma), especially with prolonged use.

Here’s what people on voriconazole should do to protect themselves:

☀️ Sun Safety Tips for Voriconazole Users

  1. Avoid direct and reflected sunlight:

    • Try to stay indoors between 10 a.m. and 4 p.m., when UV rays are strongest.

    • Choose shaded routes or walk on the shady side of the street.

    • Avoid indirect or reflected sunlight (e.g. off windows, water, sand, snow)

  2. Wear protective clothing:

    • Long-sleeved tops, trousers, and wide-brimmed hats are essential.

    • Consider UV-protective clothing (many brands offer this specifically).

    • Use UV-protective sunglasses to shield your eyes.

  3. Use high-factor sunscreen:

    • Broad-spectrum SPF 50+ sunscreen is best.

    • Apply generously to all exposed skin, including hands, ears, and neck.

    • Reapply every 2 hours, and after sweating or washing.

  4. Avoid sunbeds and tanning lamps:

    • Artificial UV exposure can also cause damage.

  5. Check windows:

    • UV-A rays can penetrate glass, so use UV-filtering films on car and home windows if needed.

  6. Regular skin checks:

    • Long-term voriconazole use has been linked to skin cancer, especially in immunocompromised individuals.

    • See a dermatologist regularly, and report any new or changing skin lesions.

⚠️ Signs of Photosensitivity to Watch For:

  • Red, itchy, or painful rash in sun-exposed areas

  • Skin blistering or peeling

  • New moles or spots, or changes to existing ones

If you're on long-term voriconazole and sun exposure is unavoidable, it might be worth discussing alternative antifungal treatments with your doctor, especially if skin damage begins to occur.

Here’s a mix of recommended sunscreens and UV-protective gear that people on voriconazole (especially those with prolonged use or immunosuppression) often find effective. These are high-protection, broad-spectrum, and suitable for sensitive or compromised skin.

🧴 Top Sunscreens for Voriconazole Users

🇬🇧 Available in the UK

  1. La Roche-Posay Anthelios UVMune 400 Invisible Fluid SPF 50+

    • Extremely high UVA/UVB protection.

    • Lightweight, non-greasy, great for sensitive skin.

    • Popular among transplant and cancer patients for sun protection.

  2. Altruist Dermatologist Sunscreen SPF 50/50+

    • Developed by a UK dermatologist.

    • Broad-spectrum, affordable, fragrance-free.

    • Available in bulk (good for daily use on large areas).

  3. Ultrasun Extreme SPF 50+

    • Long-lasting protection, water-resistant.

    • Ideal for extreme sun sensitivity.

    • One application can last several hours if you’re not sweating heavily.

  4. Eucerin Sun Fluid Pigment Control SPF 50+

    • High UVA/UVB and HEVIS (visible light) protection.

    • Helps prevent hyperpigmentation from sun damage.

  5. Heliocare 360° Mineral Tolerance Fluid SPF 50+

    • 100% mineral filters (ideal for highly sensitive or reactive skin).

    • Broad-spectrum including infrared and visible light.

    • Often recommended by dermatologists for patients with photosensitive conditions.

👕 UV-Protective Clothing

Look for clothes labelled UPF 50+ (Ultraviolet Protection Factor), which blocks 98% of UV rays. Here are some trusted brands:

🇬🇧 Available in the UK or for international shipping:

  1. Solbari (Australia/UK)

    • Offers UPF 50+ certified clothing, including hats, long-sleeve tops, trousers, and gloves.

    • Specifically designed for people with photosensitivity and skin cancer risks.

  2. Coolibar (US-based, ships to UK)

    • One of the gold-standard brands for UV-protective clothing.

    • Comfortable, stylish, and medically recommended for sun-sensitive conditions.

  3. Uniqlo Airism Long Sleeve Tops

    • While not marketed as UV-protective, many of their Airism or UV-cut ranges have built-in UV filters.

    • Great for layering or casual use.

  4. Decathlon UV Protection Range

    • Affordable UPF clothing, especially good for outdoor walking and travel.

    • Includes UV-protective hats, neck gaiters, and swimwear.

🕶️ UV-Protective Sunglasses

Make sure they:

  • Are labelled UV400 or 100% UVA & UVB protection

  • Preferably have wraparound lenses to protect the sides

  • Brands: Ray-Ban, Oakley, M&S UV-protection glasses, or Fitovers if you already wear prescription glasses.

by GAtherton