What is PTLD?

PTLD stands for Post‑Transplant Lymphoproliferative Disease or Disorder.

‘Lympho’ refers to lymphocytes, a type of white blood cell.

‘Proliferative’ means growing or multiplying quickly.

About PTLD? Slick

PTLD is when your lymphocytes grow out of control after a transplant. It can develop in anyone taking immunosuppressants after a transplant.

PTLD is a group of diseases. It includes certain kinds of growths and lymphomas. PTLD can become life-threatening. It needs to be brought up to the transplant team so they can diagnose and treat it quickly.

PTLD is often linked to the Epstein‑Barr virus (EBV) . If there is a link, it's called EBV‑positive PTLD. If there is no link, it's called EBV‑negative PTLD.

Who is at risk for PTLD?

Anyone taking immunosuppressants after a transplant is at risk for PTLD:

Solid organ transplant
After an organ transplant, immunosuppressants are needed for life to prevent transplant rejection. These medications come with the risk of developing PTLD. This means there will always be a risk of PTLD after a solid organ transplant.
PTLD tends to develop within one year of the transplant or 5 to 15 years after the transplant. About half of PTLD cases are linked to EBV.
You may have a higher risk of developing PTLD if you:
had a heart, lung, intestinal, or multi-organ transplant
have never had an EBV infection before the transplant (more common in patients under 10 years old)
are over 60 years old with a weaker immune system
have certain genes that affect the immune system
Blood stem cell transplant
After a blood stem cell transplant, immunosuppressants are needed to prevent graft-versus-host disease (GvHD). However, these medications come with the risk of developing PTLD.
PTLD tends to develop within one year of the transplant. Nearly all cases of PTLD are linked to EBV.
You may have a higher risk of developing PTLD if you:
- received a donor graft that has gone through T-cell removal
- had an unrelated or mismatched stem cell donor
- have never had an EBV infection before the transplant (more common in patients under 10 years old)
- are over 60 years old with a weaker immune system
- have certain genes that affect the immune system

Questions you can ask your transplant team

How long do I have to take immunosuppressants for?
What is my risk for developing PTLD?
If I am at risk for PTLD, why do I need to keep taking my immunosuppressants?
How will I be monitored for PTLD?

What are the symptoms?

Your transplant team monitors the health of your transplant. They also look for signs of post‑transplant complications, including PTLD.

The symptoms of PTLD are broad. They can overlap with symptoms of other conditions. Symptoms can be different in different people, and may include:

a general change in how you are feeling
swollen lymph nodes
unexplained weight loss over a few weeks
fever or night sweats
sore throat
fatigue
chronic sinus congestion
severe abdominal pain
no appetite, nausea, or vomiting
black or bloody stools

These symptoms may not mean you have PTLD, but they should be looked at by your transplant team

What you can do

If you notice anything new or a general change in how you're feeling, tell your transplant team or healthcare provider right away. Don't wait until your next appointment.

If you see a healthcare provider other than your transplant team, including in urgent care or the emergency room, tell them about your transplant and immunosuppressants. They may need to reach your transplant team.

How are immunosuppressants and EBV linked to EBV‑positive PTLD?

After a transplant, the immune system needs to be weakened with immunosuppressants. This is an important part of preventing rejection or graft-versus-host disease (GvHD) and keeping the transplant healthy. When the immune system is weak, an EBV infection can become active. This can increase the risk of EBV‑positive PTLD. Scientists are still studying what causes EBV‑negative PTLD.

Read more below to see the details.

Normally, your immune system protects your body against foreign and harmful things. Harmful things may include viruses, bacteria, and cells that have become abnormal.

B cells and T cells are two types of white blood cells. They are part of your immune system.

EBV is one of the most common viruses. Most people have been infected with EBV and carry the virus without any symptoms. EBV targets B cells.

EBV infects the body for the first time in its active state and gets inside B cells. Inside B cells, EBV can make many copies of itself and spread.
When people have a working immune system, T cells help get the infection under control.

EBV can also hide inside B cells in its dormant state. This can cause some B cells to multiply abnormally. T cells keep these B cells under control.
As long as EBV stays in its dormant state, it is harder for T cells to detect and get rid of. This is how EBV can remain in the body without causing symptoms.

The working immune system and EBV

Immunosuppressants must be taken after transplant to weaken the immune system. They prevent rejection or graft-versus-host disease (GvHD) and keep the transplant healthy.

The weakened immune system, EBV, and PTLD

When the immune system is weakened, so are T cells. It means the body is less protected against new and existing infections, like EBV.

The weakened immune system, EBV, and PTLD 2

In people who had EBV before the transplant, EBV can become active again, and B cells with EBV inside can multiply out of control.

If weakened T cells can't keep EBV and the multiplying B cells under control, it may lead to EBV‑positive PTLD.

The weakened immune system, EBV, and PTLD 3

In people who have never had EBV before the transplant, the donor tissue or cells may introduce EBV into the body. The weakened immune system may have a harder time fighting the new EBV infection. This increases the risk of EBV‑positive PTLD.

The weakened immune system, EBV, and PTLD