Graft-versus-host disease (GVHD) is a serious condition that can develop after an allogeneic (from a donor) stem cell or bone marrow transplant. It occurs when healthy donor cells (the graft) attack the unrecognized cells of the recipient (host). The two main types of GVHD — acute and chronic — each affect different organs and cause a range of symptoms.
If you or someone you love has GVHD, you may wonder how long it will last. The answer depends on several factors, including the type and severity of GVHD. It’s important to talk with your doctor about what to expect based on your specific situation. Below, we explore key facts about GVHD and whether it may go away over time.
Acute graft-versus-host disease occurs in about 33 percent to 50 percent of people who receive an allogeneic stem cell transplant, though some estimates reach as high as 70 percent. Chronic graft-versus-host disease affects around 40 percent to 50 percent of people who get a transplant.
The surface of most cells in the body is covered with proteins called human leukocyte antigens (HLAs). These unique markers help the immune system distinguish between the body’s own cells (“self”) and foreign cells (“nonself”). A mismatch of HLA between a donor and recipient is the biggest risk factor for developing GVHD. Issues with HLA matching can happen whether the donor is an unrelated person who’s a partial HLA match or a family member who’s not a full match.
Other risk factors for GVHD include:
If you’ve previously had acute GVHD, you may have an increased risk of chronic GVHD. One study noted that 66 percent of people diagnosed with chronic GVHD previously had acute GVHD.
On average, acute GVHD starts 25 days after a transplant, although it can develop anytime between 10 and 90 days posttransplant. Chronic GVHD appears 100 days or more — sometimes even years — after the procedure. In a study of more than 5,200 people with chronic GVHD, 28 percent were diagnosed at one year, 38 percent were diagnosed at two years, and 42 percent were diagnosed at three years after their transplant.
Acute and chronic GVHD can affect different organs, leading to different symptoms. Acute GVHD most commonly affects the gastrointestinal (digestive) tract, skin, and liver. Symptoms may include:
Chronic GVHD can affect just one organ or several. Like acute GVHD, it can affect the skin, liver, and digestive tract, but chronic can also involve the eyes, mouth, lungs, hair, nails, joints, muscles, and genitals. Signs and symptoms include:
Symptoms of acute and chronic GVHD can range from mild to severe. It’s important to tell your healthcare team about any new symptoms after your transplant — even years later — since chronic GVHD can develop long after the procedure.
Acute GVHD typically lasts a shorter time than chronic GVHD. However, acute GVHD can be classified into three subtypes:
Chronic GVHD is typically a long-term condition. Some people may experience it for years, and others need to manage it for the rest of their lives. It’s possible to have acute and chronic GVHD at the same time, a condition known as overlap syndrome.
There are four stages of GVHD, based on the number of organs involved and the severity of damage. Stage 1 is mild, while stage 4 is the most severe. More advanced stages (3 and 4) are associated with worse outcomes, including reduced survival rates.
People with stage 1 GVHD usually receive targeted (local) treatment — it’s applied only to the affected area. At this stage, acute GVHD often affects only the skin (skin GVHD) and is treated with topical (applied to the skin) steroid creams. People with mild, chronic GVHD (affecting one organ) also tend to be managed with local therapies, such as steroid eye drops for eye involvement.
More advanced GVHD usually requires systemic treatment — medications that affect the whole body. People with stage 2 to 4 acute GVHD are often treated with an oral (by mouth) corticosteroid such as prednisone or methylprednisolone, in addition to continuing previous preventive treatment. People with moderate to severe chronic GVHD are typically treated with prednisone first.
In many cases, GVHD can be successfully managed, but treatment may require more than one approach. First-line treatment usually involves an immunosuppressive drug (a medication that lowers immune system activity), typically a corticosteroid. Mild GVHD may resolve with corticosteroids alone, but more severe or persistent cases often require additional treatments.
People who don’t respond to their initial corticosteroid therapy — a condition known as steroid-refractory GVHD — will need second-line treatment and possibly more.
One study of people with chronic GVHD found that 96 percent needed at least one systemic therapy, with many requiring multiple therapy lines:
A better response to initial treatment has been linked to higher survival rates.
Chronic GVHD can last for years or even your whole life. Even with successful treatment, managing GVHD can take a long time. People with chronic GVHD may require steroids for two to three years, and some may need to continue treatment for the rest of their lives.
In one study, people with chronic GVHD who needed only first-line therapy were treated for an average of 263 days. For those with steroid-refractory GVHD, average treatment times were:
If first-line therapy doesn’t work, you have several options. Drugs approved by the U.S. Food and Drug Administration (FDA) include:
Another potential treatment is extracorporeal photopheresis, a procedure in which a machine collects white blood cells and exposes them to ultraviolet light before returning them to the body. This process modifies immune cells to help reduce GVHD symptoms.
For some people with graft-versus-host disease, clinical trials may provide access to new treatments. However, clinical trials also come with risks, such as potential side effects from experimental treatments or the chance that the new treatment may not be effective. If you’re interested in clinical trials, the GVHD Alliance offers resources to help you search for available studies. You can also talk with your doctor or transplant team about clinical trials in your area.
Another possible advantage of participating in a clinical trial is reduced costs. A 2023 study in the journal Transplantation and Cellular Therapy found that the average cost of a stem cell transplant with acute GVHD treatment to be $34,260. The average cost of a transplant with chronic GVHD treatment ranged from $351,260 to $656,804, depending on length of treatment. Many clinical trials cover treatment costs for participants, but travel and other expenses may not be included. Taking part in a trial may also mean more medical appointments, tests, and travel, which could add to your time and effort.
Talking with your healthcare provider is key to understanding your GVHD. Your doctor can explain what kind of GVHD you have, how severe it is, and how likely it is to be resolved with treatment. Be sure to check in with your doctor if you notice any new symptoms of GVHD so that they can adjust your treatment plan as needed. If you’re interested in clinical trials, your healthcare team may also be able to help connect you with available studies.
On myGVHDteam, the site for people with graft-versus-host disease and their loved ones, people come together to ask questions, give advice, and share their stories with others who understand life with the condition.
Are you living with long-term GVHD? Have you tried more than one kind of treatment? Share your experience in the comments below.
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