Graft versus host disease is very specific to transplant. It can be acute or chronic. The word “GRAFT” refers to the donor stem cells and “HOST” refers to the patient. Graft versus host disease (GVHD) occurs when the donor’s transplanted cells attack the patient’s body. Chronic GVHD usually starts more than three months after the transplant, but it can be earlier or later. Chronic GVHD can follow acute GVHD but can also occur by itself. Unlike acute GVHD, it starts very slowly and sometimes is hard to recognize and the patient feels that something is just not right. Chronic GVHD can have different manifestations that resemble other common diseases in which the patient’s immune system may attack the skin, muscles, salivary or thyroid glands, eyes, and other organs. The main problem in chronic GVHD, however, is the treatment causing profound immunosuppression with the patient’s inability to fight infections. The patients are on prophylactic medications to prevent viral, fungal or bacterial infections.
Symptoms of Chronic Graft Versus Host Disease:
Most parts of the body can be affected by chronic GVHD. It can involve the skin, liver, intestines, eyes, mouth, joints and fascia, the thin layer that recover the muscles.
Some symptoms that you may ask the physician to check to rule out chronic GVHD are:
- Skin may look dry, flaky, shiny, discolored, red, darker, dirty looking or lighter in small spots
- It may feel thicker or tight
- The patient may feel itching, pain when touched, burning
- Difficulty to heal cuts or ulcers
- Inability to sweat, even when it is very hot
- Nails may have ridges or cracks/splitting
- Hair may fall out in patches or overall
- It may become thinner or gray
- Mouth may feel dry, with less saliva
- Mouth may look red and with sores or blisters
- White streaks inside the checks that look like thrush, but do not come off when brushed
- May have pain with eating and swallowing
- Food can taste different, funny, or even cause a burning sensation when trying to eat spicy foods or brush the teeth with a regular tooth paste
- The patient may not be able to open the mouth big enough to eat a hamburger
- Eyes may look red and tired and initially have excessive tearing, but chronic GVHD ultimately leads to chronic dry eyes
- Burning or gritty sensation- pain
- Children may close their eyes in bright light, and not want to go outside
- Patients are more likely to scratch the eye lens and may complain of blurred vision, not seeing well
- The person may have jaundice - yellow in the eyes and/or skin
- Dark colored urine
- The stool may turn lighter to white
- Lung changes do not produce any symptoms until the lungs are severely damaged.
- No change in the way one looks when sitting but there is usually shortness of breath during exercise (walking, climbing stairs, singing)
- Muscles may be more visible in the neck
- Wheezing noise or cough
- Patient may feel chest tightness and difficulty in catching a breath when running
- Can be associated to sinus infections, post nasal drip and cough
- Some patients may lose weight, complain of some heartburn, nausea and vomiting
- Loose stools or diarrhea every so often
- Difficulty swallowing and having pills/food stick in the food pipe.
- No noticeable changes on the outside
- Internal changes specially in females in may include – smaller opening, ulcers, shortening of canal
- May have no symptoms or vaginal dryness, itching
- It may be painful to have sex
- May not get period or menstrual cycle
- Muscle stiffness and cramps
- May not be able to straighten the elbows, wrist, knees or ankles due to contractures or parts of the skin that sticks to bones or sinks down
- May not be able to reach up and get things
- Joint pain and limited range of movement
- Swelling puffy areas like the ankles or wrists
The diagnosis of chronic GVHD sometimes requires a biopsy of the affected area. Your transplant team will discuss this with you. Before the biopsy the transplant team will consider all other possible causes for the symptoms. Your physician may try some local therapy before using oral or intravenous medications to decrease the side effects from the medications.
Treatment of chronic GVHD varies based on symptoms and response. Most patients are treated with immunosuppressive drugs such as steroids, cyclosporine or tacrolimus and other drugs. These drugs weaken the ability of the donor’s cells to attack the patient’s tissues and organs. Each area affected by the chronic GVHD will also be treated with some topical medications and moisturizers. For example the patient will be putting creams on the skin and may use an inhaler for the lungs. Patients who have lost the ability to sweat must be very careful not to get overheated and decrease time in heat.
It is extremely important that patients with chronic GHVD be under the care of an experienced physician as they are at very high risk of having life threatening infections. They should immediately seek care if they develop a fever, shortness of breath or feel lightheaded.
The information on the website is intended to introduce you to some of the medical procedures and treatments which you/your child may receive when undergoing a hematopoietic progenitor cell transplant. The information on the website provides general guidelines but cannot replace the recommendations of your primary medical team. Specific patient care treatment options and procedures are the prerogative of each patient and their medical care team. You are encouraged to discuss any concerns or questions you have with your medical care team. Although every attempt has been made to post information that is clear and accurate, no guarantee is made to the reliability, completeness, relevancy, accuracy, or timeliness of the content. No liability is assumed by the Pediatric Blood and Marrow Transplant Consortium for any damages resulting from use or access to information posted on this website.