Chronic GVHD can begin any time post transplant, but typically develops during the third to sixth month. Sometimes patients have their first symptoms of GVHD when their immunosuppressive medications are stopped. If you have had or are experiencing acute GVHD, you are more likely to have chronic GVHD. Symptoms of chronic GVHD can involve the skin, joints, mouth, gastrointestinal tract and other organs. How much GVHD you experience, and how serious it is varies widely from patient to patient.
Living with chronic GVHD
Living with chronic GVHD means dealing with the symptoms. It may mean dealing with side effects of your treatment as well. Chronic GVHD may put limits on what you can do or how well you feel, and it may last for many years. Doctors continue to work to find better ways to prevent, treat and manage GVHD.
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Common strategies for treating symptoms and side effects
It can be a complicated balancing act between strengthening your immune system to fight infection, and suppressing your immune system to control GVHD. Because each person's experience is unique, it is often a case of trial and error to get the balance right. Pay attention to warning signs and report them early to get the most effective treatment possible.
If your medical team suspects an infection, they will take cultures (blood, urine, stool, saliva) and might do other tests such as a chest X-ray to find out if the infection is bacterial, viral or fungal. Each type of infection requires specific treatments that your doctor will tailor to your needs.
The most common drugs used to prevent the immune system from attacking the body are cyclosporine and prednisone (a type of steroid). Other drugs that can be used include tacrolimus and mycophenolate.
Side effects of immunosuppressants
These drugs prevent or treat GVHD by suppressing your body's immune system. Unfortunately, they also increase your risk of developing infections because they prevent your body from fighting off germs. These drugs help many patients, but not all. Besides weakening your immune system, immunosuppressants can also affect the way you look and feel. They may cause:
- Depression or anxiety
- Mood swings
- Weight gain
- Bloated face
- Extra hair growth, especially on the face and back
These drugs can also affect your emotional and mental state. While on these drugs, some patients experience drug-induced depression, confusion, anxiety, mood swings, and exaggerated feelings of anger or excitement. Keep in mind that these effects are temporary and that many people do not experience these side effects.
Cyclosporine is an immunosuppressant used by many transplant patients. Always take cyclosporine exactly as directed, at the same time(s) each day and in the same relation to meals. Take the tablet form with a full glass of water. The oral solution may be mixed with specific beverages. FOLLOW THE DIRECTIONS CAREFULLY. Always measure dosages exactly and mix with the same beverage for consistent dosage. Stir well and drink immediately. Do not allow to stand. Do not eat grapefruit or drink grapefruit juice while taking cyclosporine.
Possible side effects of cyclosporine
Notify your doctor immediately if you develop:
- Fever or chills
- Sore throat
- Unusual bleeding or bruising
- Mouth sores
- Abdominal pain
- Pale stools
- Darkened urine
These symptoms could be early signs of dangerous side effects.
Prednisone is a steroid used to reduce inflammation and suppress the immune system. As with cyclosporine, take it exactly as directed. Never skip a dose or stop taking it on your own. You will be closely monitored through blood testing and your doctor will adjust your dose as needed.
Possible side effects of prednisone
Notify your doctor immediately if you experience:
- Sensitivity to UV and sunlight
- Fluid retention
- High blood pressure
- Loss of muscle mass
- Bone weakness
- Changes to the skin
- Numbness or tingling
- Cataracts or glaucoma
Your medical team will discuss all the precautions and side effects of your medications with you, and help you manage any complications.