Graft-versus-host disease (GVHD) is a potentially life-threatening complication of a stem cell transplant. A stem cell transplant (sometimes also referred to as a bone marrow transplant) offers a lifesaving treatment option for people with leukemia, lymphoma, and other blood disorders. However, recovering from a stem cell transplant can take several months.

If you or a loved one develops GVHD, you’ll likely be worried about how much longer it may take to recover from this complication. The answer depends on many factors, including which type of GVHD you have, how you respond to treatment, and which symptoms you have.

Everyone’s experience with GVHD is unique. In this article, we’ll help you understand the factors that can influence how long GVHD lasts and how long you may need treatment.

How Long Does GVHD Last Based on Type?

GVHD is grouped into two main types — acute and chronic GVHD. Each type differs based on when it begins and how long it lasts.

How Long Does Acute GVHD Last?

Acute GVHD usually develops in the first 100 days after a stem cell transplant. Acute GVHD symptoms aren’t typically long-lasting, and signs of chronic GVHD aren’t present.

In GVHD, immune cells in the graft (the donor stem cell transplant) attack healthy cells in the host (the transplant recipient). In acute GVHD, tissue damage and inflammation usually begin within a few weeks of the transplant.

How Long Does Chronic GVHD Last?

Chronic GVHD can happen at any time after a stem cell transplant. Signs of chronic GVHD are present, but there are no signs of the acute form.

In chronic GVHD, long-term inflammation damages healthy tissues. Over time, the damaged tissue is replaced with scar tissue in a process called fibrosis. The new scar tissue is stiffer and less flexible. This makes it harder for the affected organ to do its job. If enough scar tissue replaces healthy tissue, it can change how well an organ is able to function.

Does Treatment Affect How Long Acute GVHD Lasts?

Corticosteroids (steroids), such as prednisone, are considered the first-line (preferred) treatment for both acute and chronic GVHD. Your response to steroid treatment can affect how long GVHD will last.

Steroid Treatment in Acute GVHD

The treatment for acute GVHD depends on how severe your symptoms are. Doctors use different grading systems to classify acute GVHD, with the most common being the Glucksberg system (grades 1 to 4) and the International Bone Marrow Transplant Registry (IBMTR) system (grades A to D). These grades are based on how much your skin, liver, and gut are affected.

• Mild (grade 1/grade A) — Skin rash on a small area of the body, with no liver or gut involvement
• Moderate (grade 2/grade B) — Rash covering more of the body, plus mild gut or liver symptoms
• Severe (grade 3/grade C) — Widespread rash, significant diarrhea, or high bilirubin levels
• Very severe (grade 4/grade D) — Life-threatening symptoms, such as severe liver damage, extreme diarrhea, or painful gut swelling

If you have mild acute GVHD, you may only need local treatment with a topical (on the skin) steroid cream or ointment. However, if you have moderate to severe acute GVHD, you’ll need systemic (whole-body) treatment with a steroid you take by mouth or into your veins.

If you respond well to steroid treatment, your symptoms should start improving within a few days. Your transplant team will check how you’re responding to steroid treatment after about five to seven days of treatment by performing a formal assessment of your skin, liver, and gastrointestinal tract. If your symptoms are improving at this point, your steroid dose may be gradually decreased over several weeks. About half of people with acute GVHD will respond to the first steroid treatment.

You may still need several weeks of treatment if you have severe acute GVHD symptoms. In a 2022 study, half of people who needed hospitalization for acute GVHD needed to stay longer than 27 days.

Second-Line Treatments in Acute GVHD

Acute GVHD may last longer if you don’t respond well to steroid treatment, also known as steroid-refractory GVHD. Treatment for steroid-refractory acute GVHD involves using second-line treatment options. You may begin a second-line treatment within a few days of starting a steroid if your symptoms get worse.

Second-line treatments are usually given for several weeks. For example, ruxolitinib (Jakafi) is recommended for eight weeks of treatment in people with steroid-refractory acute GVHD. Treatment with mycophenolate mofetil (CellCept, Myfortic, Myhibbin) or etanercept (Enbrel) is often recommended for about one month before the dose is gradually lowered.

Does Treatment Affect How Long Chronic GVHD Lasts?

Most people with chronic GVHD will need treatment for a longer period of time to improve their symptoms. Steroids are also the first-line treatment for chronic GVHD. In severe chronic GVHD, your transplant team may add ruxolitinib to your treatment regimen.

Treatment often lasts longer than one year for chronic GVHD. About half of people with chronic GVHD will respond to steroid treatment within two to three years. Those that don’t respond to steroids will need second-line treatments.

Second-Line Treatments in Chronic GVHD

Your transplant team will regularly monitor your chronic GVHD symptoms while you’re taking a steroid. Just like in acute GVHD, you’ll need second-line treatments if your symptoms worsen after one to two weeks. You may also need second-line therapy if your symptoms don’t improve within one month of steroid treatment or if your steroid dose can’t be lowered without symptoms returning after two months of treatments.

Treatment with second-line treatment options is often recommended for several months or years. It may take several months to see a response to treatment. In clinical trials, ruxolitinib was given for at least six months. Additionally, many people taking either belumosudil (Rezurock) or ibrutinib (Imbruvica) in clinical trials continued the drugs for longer than one year. Mycophenolate mofetil is often recommended for nine to 12 months for steroid-refractory chronic GVHD.

Treatment with extracorporeal photopheresis (ECP) — a therapy that uses ultraviolet light to alter the immune system — may require twice-weekly clinic visits for several months.

How Long Do Symptoms of GVHD Last?

Some GVHD symptoms can continue even after you’ve finished treatment. This is especially true in chronic GVHD. Organ damage from chronic GVHD may be permanent if your symptoms don’t respond well to treatment or if your symptoms progress before treatment was started.

GVHD symptoms that often become long-lasting or permanent include:

• Thickening of the skin from skin GVHD
• Lung problems from bronchiolitis obliterans syndrome (BOS)
• Ulcers (sores) in the mouth that don’t respond to treatment
• Dry eyes, eye pain, vision loss, and other eye problems
• Gastrointestinal (digestive) tract problems

Since many chronic GVHD symptoms can cause permanent organ damage, it’s important to catch these symptoms early. Early diagnosis and treatment may be able to shorten the amount of time you’re affected by these symptoms.

Because these symptoms can develop several months or years after your transplant, you can’t rely on your transplant team to catch these symptoms early. To help detect symptoms before they’re permanent, you should carefully examine your entire body regularly. If you notice any symptoms that are new or don’t go away, talk to your healthcare provider right away.

Treatment Side Effects

In addition to symptoms related to GVHD, long-term steroid treatment can leave lasting side effects that can affect your quality of life. Steroid side effects that may continue, even after you stop treatment include:

• Eye problems like glaucoma or cataracts
• Moon face (developing a rounded face shape)
• High blood sugar and an increased risk of diabetes
• Osteoporosis (weak bones)

Other medications used to treat or prevent GVHD can also cause organ damage as a side effect. Talk to your transplant team about how to decrease your risk of side effects from your treatment and prevention regimen.

Talk With Others Who Understand

On myGVHDteam, the site for people with GVHD and their loved ones, people come together to ask questions, give advice, and share their stories with others who understand life with GVHD.

How long have you or a loved one been living with GVHD? How long did you need GVHD treatment? Share your experience in the comments below.