10252 Photopheresis

Overview

Photopheresis (say: foh-toh-feh-REE-sis) is a specialised treatment that uses your own white blood cells, a light-sensitising medicine and ultraviolet (UV) light. It is sometimes called extracorporeal photopheresis, or ECP. During a session, a machine gently takes a small amount of your blood and separates out some of the white cells that play a part in your immune system (your body's defence system). Those cells are mixed with a medicine that makes them sensitive to light, then exposed to UV light. The treated cells are then returned to your body, along with the rest of your blood. The aim is to gently rebalance the immune system rather than to kill cells directly. Photopheresis is not a disease and it is not a medicine you take at home — it is a procedure carried out in a hospital or specialist unit, usually over a series of sessions.

No, it is not common. Photopheresis is a specialist treatment offered in a limited number of hospital centres. Most people will never need it, and many general doctors will rarely or never refer someone for it. If it has been suggested for you, it usually means your specialist team thinks other treatments have not worked well enough or are not suitable for you.

Photopheresis is mostly used in adults. It may be offered to people with certain types of skin lymphoma (a cancer of immune cells that shows up mainly on the skin), to people who have had a stem cell transplant and developed graft-versus-host disease (where donor cells attack the body's own tissues), and sometimes to people whose body is rejecting a transplanted organ or who have certain immune conditions affecting the skin or connective tissue. It is used much less often in children, and only in specialist centres.

Symptoms

Common symptoms

• There are no symptoms caused by photopheresis itself. The symptoms you have are from the condition the treatment is being used for.
• Skin symptoms such as patches, plaques, redness, scaling or itching are common reasons photopheresis is offered.
• After a stem cell transplant, symptoms such as a widespread rash, loose stools, tummy upset, dry eyes or mouth, or stiff joints may be signs of graft-versus-host disease.
• During or just after a session, some people feel cold, light-headed or tired while blood is being taken and returned.
• Mild tiredness or a slightly 'fluey' feeling for a day or so after treatment is common.
• Small bruises or soreness where a needle or line was placed are common and usually settle quickly.

Symptoms in children

• Photopheresis is rarely used in children and only in specialist children's centres.
• Children usually need a special line (a thin tube placed into a large vein) so they do not need repeated needles, which can feel worrying at first.
• A child may feel tired, chilly or upset during or after a session, and may need extra reassurance and rest.
• Children can become low in blood pressure or low in calcium during the procedure, so staff watch them closely and treat any feelings of tingling or cramp straight away.

Symptoms in older adults

• Older adults are more likely to feel dizzy or light-headed when blood is taken and returned, so blood pressure is checked often.
• Veins can be harder to find, so a special line may be suggested instead of repeated needles.
• Tiredness after sessions may last a little longer, especially if there are other health conditions.
• Some medicines, such as water tablets (diuretics) or blood pressure medicines, may need adjusting around treatment — always check with your team first.

Causes

Main causes

• Photopheresis is not caused by anything — it is a treatment. It is chosen because of the condition you have, not because of something you did.
• Skin lymphomas, including mycosis fungoides and Sézary syndrome (types of lymphoma that mainly affect the skin), are one of the main reasons it is used.
• Graft-versus-host disease after a stem cell transplant, where donated cells react against your body, is another common reason.
• Rejection of a transplanted heart, lung or kidney is sometimes treated with photopheresis.
• A small number of people with immune conditions affecting the skin or connective tissue, such as scleroderma or certain forms of arthritis, may be offered it.
• The treatment is thought to work by helping the immune system calm down and regulate itself, rather than by suppressing it completely.

Risk factors

• Having one of the conditions listed above is the main reason photopheresis is considered.
• Poor or hard-to-find veins can make the procedure harder, so a special line may be needed.
• Low blood counts, low blood pressure, or being very unwell at the time of a session may mean treatment is delayed.
• The light-sensitising medicine can make your skin and eyes sensitive to sunlight for a day or so, so you will be given advice on covering up and wearing sunglasses.
• Pregnancy, a recent severe infection, or a history of reactions to the light-sensitising medicine will be discussed carefully with your team.
• Epilepsy, kidney problems or liver problems may need extra checks before treatment starts.

When to see a doctor

See a doctor urgently if:

• You develop a fever, chills or feel suddenly very unwell after a session.
• There is redness, swelling, oozing or pain around your line or needle site.
• You have chest pain, breathing problems, or swelling of the face or throat — call your local emergency number straight away.
• You notice unusual bruising or bleeding, or feel dizzy and faint.
• Your skin symptoms get much worse, or a rash starts blistering or peeling.

Book a routine appointment if:

• You feel more tired than usual, or recovery after sessions is taking longer.
• Your skin, joints, eyes or mouth symptoms are changing.
• You are finding it hard to cope with the travel, time or disruption of treatment.
• You are due a vaccination, or are planning travel or pregnancy.
• You have questions about how many sessions you will need and what progress looks like.

Diagnosis

Photopheresis is a treatment, so the 'diagnosis' part is really about working out whether it is the right option for you. Your specialist team will first confirm exactly what condition you have, how active it is, and what other treatments you have already tried. They will then check whether photopheresis is safe and suitable for you, which usually means a review of your blood counts, your veins, your general health and any other medicines you take. The decision is made together with you, and you should feel able to ask why it is being suggested and what the alternatives are.

Tests that may be done

• Blood tests to check blood counts, kidney and liver function, and to look for any signs of infection.
• Skin examination and sometimes a skin biopsy (a small sample of skin taken for testing) to confirm the type of skin condition.
• Scans such as a CT or PET scan, or a lymph node biopsy, if a lymphoma is being assessed.
• Tests to measure how well your veins can cope with the procedure, sometimes including an ultrasound of your veins.
• An electrocardiogram (ECG, a tracing of your heart) or other heart and lung checks if you have an existing heart condition.
• A review of all your medicines by your pharmacist or doctor before treatment starts.

What to expect at your appointment

You will usually have an appointment to talk through the treatment before your first session. Someone will explain how the machine works, how long each session lasts, how often you will need to come, and what the possible side effects are. You may be asked to sign a consent form. Before your first session, you may be given the light-sensitising medicine and given advice about staying out of bright sunlight. On the day, expect to be in the unit for several hours — bring a book, headphones, a phone charger and a warm layer, and ask whether someone can stay with you.

Treatment

Photopheresis is usually given in cycles: for example, treatment on two days in a row, repeated every few weeks, with the schedule adjusted depending on how you respond. Each session involves sitting or lying in a reclining chair while a machine takes a small amount of blood, treats some white cells and returns them. You may have a needle in each arm, or a special line placed in a large vein if your veins are difficult. Many people read, listen to music or doze during the session. Your team will keep checking your blood pressure and how you feel. Progress is usually judged over weeks to months, not after one session.

Self-care at home

• Drink plenty of water in the day before and the day of your session, unless your team has told you to limit fluids.
• Eat something light before you come in, as low blood sugar can make you feel faint.
• Bring a warm layer, as you may feel chilly while blood is being taken and returned.
• Follow your team's advice about covering up and wearing sunglasses for about a day after the light-sensitising medicine.
• Keep the line or needle site clean and dry, and check it daily for redness or soreness.
• Plan a quieter day after treatment, and ask for help with lifts or childcare if you need it.
• Keep a simple diary of how you feel after each session — it helps your team adjust your plan.
• Tell your team about any new medicines, supplements or herbal remedies before you start them.

Medical treatments

Photopheresis itself is the treatment — no separate medicines are needed beyond the light-sensitising solution used during the procedure. The treatment is usually given alongside other care for your underlying condition, which may include other approaches chosen by your specialist team. Your team will decide how often you need sessions, how long to continue, and what would count as a good response. They will also review whether other options might suit you better. Because photopheresis is only one part of a wider plan, always discuss any changes with your specialist team rather than making decisions alone.

When is surgery considered?

Surgery is not part of photopheresis. Occasionally, a minor procedure is needed to place a special line (a thin tube) into a large vein so that treatment can be given more easily — this is a small operation done under local or general anaesthetic. For some of the conditions photopheresis is used for, other treatments such as light therapy, radiotherapy or surgery may be options, and your specialist team will discuss these with you.

Living with this condition

Photopheresis takes up a fair amount of time, especially at the start. Most people find it helps to treat treatment days as 'hospital days' and to keep the rest of the week as normal as possible. Sessions can be tiring, so it helps to have a lift home arranged and to keep the evening free. Between sessions, many people carry on with work, study, caring duties and hobbies, although you may need to pace yourself. Your team can help with practical things like letters for work, appointment timing and parking.

Lifestyle tips

• Keep a simple record of your symptoms, energy levels and any side effects to share at appointments.
• Ask for a treatment timetable in advance so you can plan work, family and travel.
• Stay active gently — short walks and light activity can help with tiredness.
• Avoid alcohol in large amounts, and check with your team about any limits.
• Protect your skin from strong sun, especially in the day after the light-sensitising medicine.
• Keep up with your usual vaccinations and health checks, but always check with your team before any vaccine.
• Ask your pharmacist to review your medicines, including over-the-counter ones, for anything that could affect light sensitivity.

Diet and exercise

There is no special diet for photopheresis, but eating regularly and drinking enough helps you cope with sessions. A light meal a couple of hours before treatment is sensible. Gentle, regular movement — walking, stretching, swimming if your line allows — can help with tiredness, mood and stiffness. Build up slowly and stop if you feel unwell. If you have lost weight or your appetite is poor, ask your team about seeing a dietitian.

Mental health and emotional wellbeing

Long-term treatment can be tiring, and it is very common to feel low, frustrated or anxious at times. You may worry about how you look, about time away from work, or about what the future holds. These feelings are normal and worth talking about. Tell your team if your mood is affecting your sleep, appetite or daily life — support is available, and asking for it is a sign of strength, not weakness. If you ever feel unable to cope or have thoughts of harming yourself, contact your local emergency number or a crisis support service straight away, and reach out to someone you trust.

Prevention

Photopheresis is a treatment, so it cannot be prevented. What you can do is reduce the chance of problems during treatment: follow the advice about sun protection, keep your line or needle site clean, tell your team about any new symptoms early, and keep your appointments. If you are having treatment for a condition such as graft-versus-host disease, sticking to your overall care plan helps give the treatment the best chance of working.

Vaccines

Talk to your specialist team about vaccinations before you start treatment and at each review. Some vaccines are best given before treatment begins, and some are not recommended while you are having treatment. Never book a vaccination without checking with your team first, and ask your household contacts to keep their own vaccinations up to date.

Screening programmes

You will have regular blood tests and check-ups while having photopheresis. These are to check your blood counts, watch how your condition is responding, and pick up any problems early. Depending on your underlying condition, you may also have regular skin checks or scans. Keep any other routine screening appointments, such as eye checks if you have dry eyes, and mention any new symptoms at your next visit.

Complications

If left untreated

• Without treatment, the condition photopheresis is being used for may become more active — for example, skin lymphoma can spread over more of the skin, or graft-versus-host disease can affect more organs.
• Symptoms such as itching, rash, joint stiffness or tiredness may get worse and affect sleep and daily life.
• Some conditions can affect the eyes, mouth, liver or lungs over time if not managed.
• Your specialist team will only suggest delaying or stopping treatment if it is safe for you, and will discuss the reasons with you.

Long-term outlook

Many people respond well to photopheresis, although it often works slowly — improvement is usually measured over weeks to months rather than days. Some people have a very good response and can reduce how often they need treatment; others find it helps control symptoms rather than making them disappear. Not everyone responds, and your team will review this with you honestly and offer other options if needed. Overall, photopheresis is generally well tolerated, and for many people it is a way of managing a long-term condition while getting on with everyday life.

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