Frequently Asked Questions

What is Photopheresis?

Photopheresis, or extracorporeal photoimmune therapy, is a procedure that may be recommended by your doctor to treat Graft Versus Host Disease (GVHD) or Cutaneous T-Cell Lymphoma (CTCL).

During photopheresis, some of your blood is taken from your vein and separated into its different components: white blood cells, red blood cells, and platelets. Your white blood cells are treated with a medication called uvadex, exposed to ultraviolet (UV) light, and then returned to you, along with your other blood cells. These treated cells stimulate your immune system to help your body fight GVHD and CTCL.

How do I prepare for Photopheresis?

Two days before your procedure: Drink plenty of liquids. Being well hydrated helps your blood to flow better during your procedure.

The evening before your procedure: Eat a low-fat meal. You should avoid foods such as 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 is finished.

On the day of your procedure:

  • Eat low-fat meals and do not skip any meals.
  • You will not be able to use the bathroom during photopheresis, so do not drink too much for a few hours before your procedure. If you need to use the bathroom during the procedure, you may use a bedpan or urinal.
  • Bring a list of any medications you are taking, including patches and creams.
  • Wear comfortable clothing with loose sleeves.
What happens during Photopheresis?

Your nurse will insert a needle into your arm or will connect your CVC to the photopheresis machine. The photopheresis machine will draw your blood and separate the white blood cells from the rest of the blood components. Your red blood cells and plasma will be returned to you through your arm or CVC.

Your white blood cells will be treated with a medication called uvadex and then exposed to UV light, which activates the medication. The treated white blood cells will then be re-infused into your body through your arm or CVC. The treated cells will stimulate your immune system to fight GVHD or CTCL.

Another medication called heparin is used during the procedure to prevent your blood from clotting in the photopheresis machine.
How long does Photopheresis take?

The procedure usually takes about 1 to 3 hours. After your procedure is finished, your nurse will check your vital signs including your pulse and blood pressure. You will then be able to go home. If you have had a needle used to acces your vein a pressure bandge will be put in place over the puncture site. This mus stay in place for 4-6 hours post treatment.

What are the possible side effects of Photopheresis?

  • Heparin (used in the ECP machine) slows the ability of your body to stop bleeding. This should go away within 2 to 4 hours. If you continue to bleed at the needle site, re-apply the pressure bandage to the site until the bleeding stops. If the bleeding still has not stopped or if you see signs of unusual bleeding, call your doctor or Rotherham ECP for advice.
  • Leave the bandage on the needle site for at least 4-6 hours after your procedure. Avoid heavy lifting for the rest of the day. You may notice some tenderness or bruising at the needle site. This is normal.
  • You can apply a cold compress to the site for the first 24 hours if there is bruising, then a warm compress if you have discomfort. If the site continues to hurt after several days or seems to be getting worse, contact Rotherham  ECP  for advice
  •  
  • Uvadex® solution, the medicine used in Photopheresis, can make you more sensitive to sunlight for about 24 hours after the treatment. Taking the right precautions reduces the risk for cataracts (a condition of the eyes) or serious sunburns. You should protect your eyes and skin by taking the following simple, but very important, precautions for 24 hours after each treatment: 
  • Avoid sunlight as much as possible, even indirect sunlight coming through a window
  • Wear sunscreen high factor when exposed to sunlight
  • Wear UVA-protective, full-coverage sunglasses when exposed to direct or indirect sunlight 
  •  
  • A rare side effect is a temporary drop in blood pressure during treatment. This is a rare occurrence and the nursing staff will be monitoring your blood pressure during treatment. Should you feel lightheaded or dizzy please inform the nursing staff immediately and they will administer intravenous fluids to rectify this effect.
  •  
  • Other possible side effects include fatigue, a temporary increase in itchiness, or a slight fever or redness appearing 6 to 8 hours after treatment. Having treatments more frequently may result in a decrease in red blood cells (anaemia). As with any procedure that involves a needle puncture, there is a small risk of infection and pain at the needle puncture site.
  • If you are concerned about any symptom following ECP please do not hesitate to talk to your healthcare professional at Rotherham Photopheresis unit.
How long do I need ECP for?

This is will depend on your response to treatment. The doctor will assess your response at each visit and give guidance on your progress. The average length of treatment is 18 months.

Do I need to stay overnight?

Only if you have a long journey between treatment dates. We provide transport in a 30 mile radius.  If you experience lethargy after treatment and are using your own transport some patients bring a designated driver with them. Other patients suffer no effect and drive to and from treatments and do not require overnight accommodation. 

How do I know if ECP is working?

This is will depend on your response to treatment. The doctor will assess your response at each visit and give guidance on your progress. The doctor will also have land mark three monthly assessments where your progress will be assessed over the past three months and the doctor will discuss your progress at these intervals as well.