A Guide To Extracorporeal Photopheresis (ECP)

A Therapeutic Apheresis Procedure

This booklet will answer the following questions about the photopheresis procedure:

How does it work?
What is expected from this treatment?
How do you prepare for the procedure?
What precautions should you follow after the procedure?

What is Extracorporeal Photopheresis (ECP)?

Extracorporeal means outside the body Photopheresis is the combination of two words:

Photo, which means light.
Pheresis, which means separation.
- Also known as extracorporeal photo-immune therapy, this is a procedure during which a certain volume of blood is drawn from your veins and sent to a machine for separation and collection of white blood cells, which undergo light-activated therapy; the blood is then returned to your body along with the remaining components of your blood.
- These treated cells will modify your immune system response and help your body fight certain immune diseases.

Uses of ECP

ECP was first used for the treatment of skin problems associated with cutaneous T-cell lymphoma (CTCL) in patients who have not responded to other types of treatment.
ECP is now also used to treat a range of diseases caused by over-reactions of the immune system. Examples include a condition called graft-versus host disease (GvHD) – a disease resulting from the attack of a stem cell graft on normal tissue after a stem cell transplant, bone marrow transplant, or organ transplant-related rejection (such as heart transplants).
ECP is also used to treat other autoimmune disorders, such as systemic sclerosis and atopic dermatitis.

What type of access will be used during the procedure?

During ECP, certain volumes of blood are gradually removed through: An inserted needle (IV cannula) A central line catheter A special port

Does this procedure hurt?

The procedure itself is generally not painful and most people report little to no discomfort during treatment. However, as with any needle puncture, there may be slight discomfort when the central line or IV cannula is inserted into your vein.
Sometimes you might feel different sensations that are not painful, which include a slight pulsing from the ECP instrument’s pump and a slight chill or cold sensation while blood is being returned to your body.

What are the common side effects of extracorporeal photopheresis?

The procedure is well tolerated by most people; they report little to no discomfort during treatment and reactions are uncommon.

During the procedure, you may occasionally feel a pins and needles sensation in your fingertips or lips and feel cold, or slightly sick due to low calcium levels. If this occurs, please inform the apheresis nurse immediately to give you the proper management you require.
You may also have some tenderness, bruising, or bleeding at the needle site; if any of these things happen, apply pressure to the site for 3 to 5 minutes until the bleeding stops.
You may experience fainting or lightheadedness as a result of a temporary drop in blood pressure and minor changes in your blood volume during the treatment. In case this happens, let the nurses know immediately so they may provide you with the proper management. You will be monitored throughout the procedure. If this occurs at home, sit or lie down right away while raising your feet up and drink cool fluids.
You may have a fever (38°C or higher) within 6 to 8 hours after your procedure as well as skin redness which usually resolves within one day.
After the phototherapy treatment, your eyes and skin will be very sensitive. Follow your post-procedure instructions carefully to protect your skin and eyes from ultraviolet light in the sun and other artificial lights.
Long-term treatment with ECP can sometimes cause anemia and fatigue due to iron deficiency; the physician will assess this and treat you accordingly.
Before the procedure, you will go through all the risks and benefits of the procedure with the apheresis team and a physician, where you will have the opportunity to ask questions before signing the consent form.

How long does the procedure take?

The procedure usually takes two to three hours, but the pre-procedure preparation, central line placement, etc., may all take another hour or two.
The length of the procedure varies from one patient to another based on the laboratory result, total blood volume, height, weight and access condition.

Pre-procedure assessment criteria

How does this procedure work?

You will be connected to the ECP instrument by a thin flexible catheter, which will be inserted into your vein; a small amount of blood will then be drawn through this tube and into the ECP instrument.
As your blood flows through the instrument, it will be separated by centrifugation into its components. The red blood cells and plasma will then be returned to your body straight away, while the white blood cells will remain in the ECP instrument for treatment with the photosensitizer, where they will be exposed to UVA light to ‘activate’ them.
The treated white blood cells are then returned to your bloodstream.
The tubing is replaced for every patient and the ECP system is completely closed, so there is no chance that your blood will come into contact with anybody else’s.

Will this procedure work for me?

ECP is an ‘immunomodulatory’ procedure that changes the response of your immune system without suppressing it.

Using ECP will minimize the use of immunosuppressive drugs that are commonly used to treat autoimmune conditions. Consequently, this will reduce the risk of infections caused by microorganisms that take advantage of weakened immune systems (opportunistic infections). This will keep your immune system intact and able to defend your body against infections

How often do I need this treatment?

Generally, a follow-up will be needed every two to four weeks for a minimum of six months.
Seeing results may take time and may be different for each person. Although you may see results sooner, your doctor may suggest that you give your treatment a minimum of six months. Your doctor will discuss with you how long your therapy should continue.
The number of sessions required to respond to treatment is different for every patient and will depend on your symptoms, the state of your immune system, the severity of your disease and how often you receive treatment. Your doctor will decide the number of treatments suited to your individual needs.
Improvement may happen gradually, so it is important that you don’t give up or feel discouraged if you don’t see results straight away.

How should I prepare for the procedure?

Two days before your procedure:

Drink eight glasses of liquids every day, avoiding caffeine and alcohol.
Being well-hydrated helps your blood to flow better during your procedure.

The night before your procedure:

Eat a low-fat meal. Avoid fried foods, cheese, eggs, butter and desserts.
If you have high levels of fat in your blood, the machine may have trouble separating your blood cells and your procedure may need to be stopped before it’s finished.
Get a good night’s sleep the night before.

On the day of the procedure:

Eat and don’t skip any low-fat meals.
Wear comfortable clothing with loose sleeves.
Bring a list of any medications you’re taking, including patches and creams.
You won’t be able to use the bathroom during photopheresis, so don’t drink too many fluids for a few hours before your procedure. If you need to use the bathroom during the procedure, you may use a bedpan or urinal.
We recommend that a family member or friend accompany you on the day of the procedure, as you may feel tired for the rest of the day. Bring a book or anything to keep you entertained.

Post-procedure instructions

After the phototherapy treatment, your eyes and skin will be very sensitive to ultraviolet light in the sun and other artificial lights. Therefore, after the procedure:

Avoid sunlight as much as possible, even indirect sunlight coming through a window.
Use sunscreen SPF 30 or higher when exposed to sunlight (both outdoors and indoors).
Wear UVA-protective, full-coverage sunglasses when exposed to direct or indirect sunlight.
Protect your skin by wearing long-sleeve clothing and wide hats.

After the procedure, you are advised to stay in bed for at least 30 minutes for monitoring prior to discharge.
Please have a light meal before you leave. You are advised to have healthy foods and fluids at home.
If you feel any unpleasant reactions at home such as rashes, allergies, fainting, or breathing difficulties, you are advised to go to the nearest hospital or come to SSMC’s Emergency Department immediately.
Avoid strenuous physical activities for 24 hours post-procedure.
Comply with follow-up appointments with your treating physician and the apheresis clinic.