What is GVHD of the skin?

Chronic GVHD (graft-versus-host-disease) of the skin happens when the donor’s cells attack your skin. It is the most common type of chronic GVHD.

Sclerotic chronic GVHD

Sclerotic chronic GVHD is a specific type of skin GVHD. “Sclerotic” means thickening. This form of skin GVHD causes thickening, tightness, and hardening of the skin and deeper tissues. Sclerosis can also make it hard to move your joints. You might notice this more in your wrists, elbows, shoulders and ankles. 

Sclerotic chronic GVHD is more common on arms, legs, lower belly and lower back. But it can happen anywhere. Sclerosis in the belly may make it harder to take a deep breath or may decrease your appetite because you feel full sooner. 

In addition, sclerotic chronic GVHD may cause skin sores to heal slowly. Skin sores are more common on the legs. 

What are the symptoms of GVHD in the skin?

The skin may itch, feel like a sunburn, feel “woody” like a stick, or you may have a pulling or tightening feeling underneath your skin.

What you can do to decrease symptoms

  • If your skin is dry, keep it moisturized. This will help to keep your skin flexible and ease itching. Apply moisturizer right after you shower or bathe to keep moisture from the water in your skin. Ointments and creams are better than lotions. 
  • If your skin or tissues are tight, gentle stretching exercises, massage or physical therapy may help loosen sclerosis. These activities should be gentle and not hurt much, otherwise you may be causing more irritation that could worsen GVHD. 
  • Stay out of the sun. Use sunscreen and wear sun-protective clothes. Sun exposure can worsen chronic GVHD and cause skin cancer and sun damage. 
  • If you have sores on your skin, keep the sores clean and dry. Ask your doctor if bandages or medicines applied to your skin may help. 
  • Avoid positions that decrease blood flow to your legs (e.g., crossing your legs or sitting for a long time). 

What does GVHD of the skin look like?

Chronic GVHD of the skin can cause color changes (red, pink, purple, brown or white), thinning or thickening, hardening, rashes, scaly areas, bumps, sores or blisters (small pockets of fluid).

What are treatments for GVHD of the skin?

Here’s how you can treat chronic GVHD of the skin: 

  • Prescription immunosuppressant medicines (medicines that hold back your immune system) that you take by mouth or by injection for your skin may help reduce inflammation (redness and swelling), decrease sclerosis you already have and prevent new sclerosis. 
  • Your doctor might also prescribe topical immunosuppressive medicines that you rub on your skin (e.g., corticosteroids, tacrolimus or pimecrolimus). These medicines can sometimes ease symptoms, such as itch or rash. But they may also cause side effects, like thinning of your skin, so don’t use them for longer or on different areas than prescribed. 
  • If your skin is itchy, anti-itch lotions or antihistamine pills (e.g., diphenhydramine or hydroxyzine) may decrease symptoms. 
  • Your doctor might prescribe extracorporeal photopheresis (ECP) to treat your chronic GVHD of the skin. ECP is a treatment where blood is removed from you, treated under light, then given back to you.

Other facts about GVHD of the skin

  • Thickening of your skin and tightness of your deeper tissues may be permanent. 
  • It’s important to tell your doctor about any skin changes and follow their instructions. This will help your skin, joints and tissues stay as healthy as possible. 
  • People with chronic GVHD have a higher risk of skin cancer. See your doctor regularly and report any changes in the color or texture of your skin. For example, you should tell your doctor about a sore that doesn’t heal or a new bump in your skin. 
  • You cannot spread GVHD of the skin to other people by touching. 

When you should call your doctor

  • Your skin symptoms worsen 
  • You’re less able to move your joints 
  • You notice any new bumps or changes on your skin