Did you know that about 70 percent of people with chronic graft-versus-host disease (GVHD) have skin-related symptoms? If you notice new rashes, changes in your hair, or thickened skin around your joints, these could be symptoms of chronic GVHD in your skin. Doctors can treat these symptoms with topical and oral medications that calm your immune system.

In this article, we’ll discuss five skin symptoms of chronic GVHD and how doctors diagnose them. We’ll also cover how to manage your symptoms with medications and supportive measures. Skin problems can affect your comfort, self-esteem, and quality of life — so it’s key to start treatment as soon as possible.

What Is Chronic GVHD and How Does It Affect the Skin?

Chronic GVHD develops in people who have previously gone through hematopoietic stem cell transplantation — a procedure that replaces diseased blood-forming cells with healthy cells from a donor. Unlike acute GVHD, which happens soon after a transplant, chronic GVHD lasts for months or even years and can develop at any time post-transplant. You may also hear stem cell transplants referred to as bone marrow transplants (BMTs). This procedure helps treat diseases like leukemia and lymphoma by restoring healthy blood cells.

Acute GVHD generally happens within 100 days of a transplant and doesn’t have the same features as chronic GVHD, which develops later and has distinct symptoms. Acute GVHD occurs when the new cells mistake your cells and tissues for something foreign and attack your body, causing various uncomfortable symptoms. In some cases, acute GVHD resolves, while in others, it progresses to chronic GVHD, which has distinct symptoms.

Overall, the skin is the most commonly affected organ in this disease. Chronic GVHD can affect any layer of the skin — including the deeper connective tissues and muscles. The types of symptoms you experience depend on which layers have been affected.

Doctors divide chronic GVHD affecting the skin into two groups — nonsclerotic and sclerotic. Nonsclerotic GVHD affects the outer layers of your skin and usually causes rashes or changes in skin color. “Sclerotic” means the skin’s deeper layers get thicker. Sclerotic GVHD makes the skin hard and tight. When the skin gets too thick, it becomes less flexible, which can make it more difficult to move certain body parts.

Symptoms of Chronic GVHD Affecting the Skin

Chronic GVHD can cause skin rashes, color changes, and new sensitivity to sun and heat. Sclerotic disease affecting your deeper tissues can limit your mobility and breathing. In some cases, GVHD can cause hair thinning or loss.

1. Changes in Your Skin Color

Inflammation from chronic GVHD can change your skin color. The exact symptoms vary from person to person. The National Marrow Donor Program notes that affected areas of skin may change to:

• Pink
• Red
• Purple
• White
• Brown

Skin changes look different depending on your skin tone. If you have a darker skin tone, you may notice more hyperpigmentation. This means the affected skin becomes darker than the surrounding skin. For some people, these skin changes can last anywhere from several months to multiple years.

2. Skin Rashes and Blistering

Some people with chronic skin GVHD develop new skin rashes and irritation. Research suggests common symptoms include discolored patches or bumps that start forming on:

• The palms of your hands
• The soles of your feet
• Your face and ears

These rashes can eventually spread to the middle of your body and affect large areas of skin. Some people report itching, burning, or tingling sensations. Others may not notice any discomfort — only a new skin rash.

Some people develop blisters or small fluid-filled pockets on their skin. Ulcers (open sores) can also appear. These wounds may not heal as quickly as they would in someone without chronic GVHD and may increase your risk of an infection.

3. Sensitivity to Heat and the Sun

Inflammation from chronic GVHD can make your skin more sensitive to heat or the sun than normal. You may feel a burning sensation when you get too hot or stay in the sun for too long. GVHD and other skin conditions can also raise the risk of skin cancer. You’ll want to protect your skin from the sun to help prevent damage.

Chronic GVHD can also destroy the sweat glands in your skin. This means you can’t sweat to cool your skin down. Many people can’t tolerate heat for extended periods of time and become very uncomfortable.

4. Tightness or Thickening of Your Skin

In some cases, chronic GVHD causes sclerosis (thickening of the skin). Symptoms of sclerosis depend on how deep the affected tissue layers are. If the thickening develops in the top layers of your skin, you can feel it just by pinching. Deeper sclerosis can cause swelling, leading to skin tightness or a pulling sensation.

The location of your sclerosis also affects what symptoms you experience. Thickening over your joints — like your knees and elbows — makes it harder to move. Most people don’t develop tightness around their fingers or in their face. Sclerosis along your chest can also make it harder to expand your lungs and breathe.

5. Hair Loss and Changes

Chronic GVHD also affects your hair and scalp. Some people experience alopecia (hair loss) with patchy areas of hair growth. This may be due to chronic GVHD directly affecting hair follicles or scalp problems like rashes, scaling, and itchiness. If left untreated, GVHD can lead to permanent hair loss.

Diagnosing Chronic GVHD Affecting the Skin

Since many inflammatory skin diseases look alike, doctors use specific tests to diagnose chronic skin GVHD. Your doctor will likely start with a physical exam to take a close look at your skin. They may also order a skin biopsy — a test that takes a small piece of skin tissue to look at under a microscope.

The biopsy can tell your doctor how much skin is affected by any sclerosis. This test also tells the difference between skin GVHD and other inflammatory conditions like lichen planus — a skin disorder that causes itchy, flat-topped bumps — or skin infections.

Treating Chronic Skin GVHD Symptoms

Doctors and dermatologists use a combination of topical (applied to the skin) and systemic (affecting the whole body) treatments to manage skin GVHD. There are also several supportive treatments you can try at home to relieve your symptoms.

Topical Treatments

Treatment options for chronic skin GVHD depend on how severe your symptoms are. Your doctor or dermatologist will likely suggest topical medications for skin rashes affecting only one part of your body. They include immunosuppressives that calm your immune system to reduce inflammation. Some examples of these medications are:

• Steroids (corticosteroids) like prednisone
• Calcineurin inhibitors like pimecrolimus (Elidel) or tacrolimus (Protopic)

Topical immunosuppressives help treat inflamed, itchy skin with rashes. However, they can have some unwanted side effects, like skin thinning. Be sure to use these creams and ointments as your doctor prescribes them to prevent more damage.

Systemic Treatments

Systemic treatments work best for treating skin GVHD affecting large areas of the body. Doctors can prescribe:

• Steroid pills or injections
• Injectable medications that target specific parts of the immune system, like infliximab
• Infusions of immunosuppressive medications like mycophenolate mofetil

Extracorporeal photopheresis (ECP) is a treatment option for people whose symptoms don’t improve with other medications. In ECP, a provider removes some blood and separates your white blood cells (WBCs) from other parts of your blood. WBCs are specialized immune cells that are responsible for attacking your cells in GVHD. The cells are treated with a special drug that’s activated when it’s exposed to ultraviolet light. The drug alters the WBCs so they don’t attack your skin cells.

Supportive Care

To prevent long-term damage, it’s important to take extra steps to protect your skin when living with chronic GVHD. Protecting your skin from the sun’s damaging rays is key to preventing skin cancer. Be sure to wear sunscreen and clothing with built-in sun protection. Avoid sunlight during peak hours — usually between 10 a.m. and 3 p.m.

With the increased risk of skin cancer, you’ll also want to regularly inspect your skin. Your dermatologist can show you how and where to look for any abnormal lesions or growths. If you find something suspicious, make an appointment to get it checked out.

To avoid dryness, keep your skin moisturized with fragrance-free products. Applying lotion right after your bath or shower locks in moisture. Thicker creams and ointments work better than lotions. You’ll also want to keep any sores or wounds clean. Talk to your doctor or dermatologist about the best ways to clean and bandage them.

Talk With Others Who Understand

On myGVHDteam, the site for people with graft-versus-host disease and their loved ones, people come together to gain a new understanding of GVHD and share their stories with others who live with the condition.

What strategies or treatments have helped you manage skin-related symptoms of chronic GVHD? Share your experiences in the comments below.