Symptoms

Chronic GVHD most often affects the skin, nails, hair and sweat glands. Symptoms may include:

• dry, itchy rash
• a burning sensation when exposed to sun or heat
• a tightening or pulling sensation 
• a change in skin color
• thickening of the skin that can restrict joint movement
• taut skin
• thin skin that tears easily
• scarring
• swelling

GVHD may also cause:

• brittle or splitting fingernails and toenails
• hair loss or thinning hair
• changes in hair color or texture
• difficulty opening your mouth, due to taut skin around the mouth
• an inability to sweat or handle heat for long periods of time, due to damaged sweat glands
• difficulty breathing, due to tight skin on the chest
• feeling full quickly because the abdomen is taut

Treatment

Topical treatments such as corticosteroids or tacrolimus ointment, combined with systemic treatments, may relieve some of these symptoms.

Extracorporeal photopheresis (ECP) or ultraviolet radiation, used under medical supervision, are also used to treat certain kinds of skin GVHD. 

(Extracorporeal photopheresis is a procedure that removes some white blood cells from the patient, mixes them with a drug called psoralen, and exposes them to ultraviolet light. The cells are then re-infused into the patient.  Find a hospital that offers ECP. [1])

Take Action!

• Inspect your skin weekly and tell your doctor right away if you have any symptoms of skin GVHD. Early detection and treatment can speed up recovery and improve long-term results.
• Use fragrance-free ointments or creams daily to keep your skin moist. Ointments and creams work better than lotions.

Skin GVHD can increase your risk of developing skin cancer. Report any new or changing spots on your skin to your doctor.

• Protect your skin from exposure to the sun. Remember that the sun’s rays can be just as damaging on a cool, cloudy day as they are on a hot, sunny day.
• When outside:
  • wear a hat, long sleeves and pants
  • use a strong sunscreen (SPF30 or higher) on any exposed skin
  • avoid being in the sun between 10 AM – 3 PM, the peak UV hours
• use UV window filters

Companies like Sun Precautions® [2] and Coolibar^® [3] offer sun protective clothing that can help shield your skin from the sun's harmful ultraviolet rays.

A laundry additive called  SunGuard™ [4] adds sun protection to your everyday clothing.

Watch this video about GVHD of the skin and connective tissues. Click here [5] to view a transcript of the video and download the slides

#GVHD

If you use social media, learn more about living with graft-versus-host disease and advances in treatment at #GVHD. Connect with others and show your support for GVHD patients.

(To view this page in Spanish click here [6].)

Next Page: Chronic GVHD of Joints, Fascia and Muscles [7] 

Updated August 2023