Supporting and educating patients and families on the intestinal failure,
intestinal rehabilitation and intestinal and multivisceral transplantation journey.
Post-Transplant
Medications
When your child receives an organ transplant, his or her body senses the new organ as foreign and the body's immune system attacks it.
Immunosuppressive medication helps reduce the risk of your child's body rejecting the new organ by lowering your immune response.
Since your child has a lowered immune response, this also means that your child is more susceptible to all types of infections.
Your child will have to take these medications for the rest of his or her life and it is very important for the survival and longevity of his or her transplant.
What it Does: Helps prevent the body from rejecting the transplanted organ.
How is it Given:
Give tacrolimus at the same time every day, usually 12 hours apart (8 hours apart for small children). Please refer to your transplant team or pharmacist for dosing instructions for your child.
Give tacrolimus either with food or without food. Give it the same way every day, since changes in food intake can affect how much tacrolimus passes from your child’s stomach into their bloodstream.
Make sure that you always have the same brand of tacrolimus. Call your transplant team if you notice that the capsules or liquid tacrolimus look different from what your child normally takes.
Common Side Effects:
Decreased magnesium in the blood.
Increased potassium in the blood.
Increased blood sugar (some children develop diabetes).
Increased blood pressure.
Damage to the kidneys (usually if blood levels of tacrolimus are too high, but long-term damage at “normal” doses is also possible).
Shakiness of the hands/feet (tremor).
Upset stomach, vomiting (throwing up), or diarrhea (watery stools).
Mild headache.
Seizures (if blood levels of tacrolimus are too high).
Leg cramps.
Other Important Information:
Never give your child grapefruit juice or any juices that contain grapefruit. These products raise the tacrolimus level in your child’s bloodstream. This can lead to more side effects. Read the labels of mixed fruit juices (front and back!) carefully.
Never let your child eat grapefruit (even when mixed in a fruit salad).
What is It: Can be used to prevent and treat episodes of rejection. If used for rejection treatment, usually it is given by IV.
How it is Given:
Given IV if used for treatment of rejection episodes.
If used for maintenance immunosuppression, can be given by mouth.
Common Side Effects:
Increased blood pressure.
Higher blood sugar levels.
Upset stomach, vomiting (throwing up), or diarrhea (watery stools).
More appetite (hunger).
Weight gain.
Edema (puffiness) and rounded face.
Mood swings, irritability.
Difficulty sleeping.
More sweating (more often at night).
Mild headache.
Acne (pimples).
Slow wound healing.
Stretch marks.
Long Term Use Side Effects:
Weaker bones
Slower growth (height)
Cataracts (a gel-like glaze over the eye(s))
What it Does: May also be used as a primary immunosuppressive agent to prevent your child’s body from rejecting the newly transplanted organ.
How is it Given:
Give cyclosporine at the same times every day, usually 12 hours apart (8 hours apart for small children). Please refer to your transplant team or pharmacist for dosing instructions for your child.
Give cyclosporine either with food or without food. Give it the same way every day, since changes in food intake can affect how much cyclosporine passes from your child’s stomach into their bloodstream.
Make sure that you always have the same brand of cyclosporine. Call your transplant team if you notice that the capsules or liquid cyclosporine look different from what your child normally takes.
Common Side Effects:
Decreased magnesium in the blood.
Increased potassium in the blood.
Increased blood pressure.
Increased blood sugar (some children develop diabetes).
Damage to the kidneys (usually if blood levels of cyclosporine are too high).
Headache.
Tremors (shakiness of the hands or feet).
Upset stomach, vomiting (throwing up) or diarrhea (watery stools).
Increased body hair growth.
Other Important Info:
Never give your child grapefruit juice or any juices that contain grapefruit. These products raise the level in your child’s bloodstream. This can lead to more side effects. Read the labels of mixed fruit juices (front and back!) carefully.
Never let your child eat grapefruit (even when mixed in a fruit salad).
What is It: May be used in addition to prograf as a secondary immunosuppressive agent to help prevent rejection of the newly transplanted organ.
How is it Given:
Give mycophenolate at the same times every day, 12 hours apart, or as instructed by your transplant team.
Give mycophenolate with food or without food. Give it the same way every day, since changes in food intake can affect how much mycophenolate passes from your child’s stomach into their bloodstream.
Giving mycophenolate with food may lessen stomach upset (such as cramps or diarrhea).
Common Side Effects:
Stomach cramps, diarrhea (watery stools).
Nausea (upset stomach), heartburn or vomiting (throwing up).
Low platelet counts (platelets help stop bleeding).
Low white blood cell counts (white blood cells help fight infection).
Low red blood cell (hemoglobin) counts (hemoglobin provides energy to the body).
Mild headache.
Birth defects and risk of malformations in an unborn fetus (girls should change to another agent while pregnant or trying to).
What is It: Can be used as a primary or secondary immunosuppressive to help prevent the body from rejecting the newly transplanted organ.
How it is Given:
Give sirolimus once a day, at the same time every day. Your child’s doctor may want your child to take it twice a day if they are on a high dose. Please refer to your transplant team or pharmacist for dosing instructions for your child.
Give sirolimus with food or without food, but give it the same way every day. Food does not have a big effect how much sirolimus passes from your child’s stomach into their bloodstream
Common Side Effects:
Upset stomach, vomiting (throwing up), or diarrhea (watery stools).
Mild headache.
High cholesterol and/or triglyceride levels.
Low white blood cell counts (white blood cells help fight infection).
Mouth sores or ulcers.
Low red blood cell (hemoglobin) counts (hemoglobin provides energy to the body).
Low platelet counts (platelets help stop bleeding).
High blood pressure.
Delayed wound healing.
Acne (pimples).
Increased protein in the urine.
Swelling.
Increase in liver function tests.
Leg cramps.
Lung inflammation (swelling).
Other important information
Never give your child grapefruit juice or any juices that contain grapefruit. These products raise the level in your child’s bloodstream. This can lead to more side effects. Read the labels of mixed fruit juices (front and back!) carefully.
Never let your child eat grapefruit (even when mixed in a fruit salad).
Thymoglobulin is an anti-human thymocyte immunoglobulin that is derived from rabbits and functions in the immunosuppression of a particular type of immune cell in the body called T cells. If your child is in acute rejection, your child's transplant team may choose to use thymoglobulin as an addition to his or her maintenance immunosuppression to help save the graft. Thymoglobulin is given intravenously.
Common Side Effects:
High blood pressure (hypertension)
Joint or muscle pain
Abdominal pain
Increased levels of potassium in the blood
Low counts of platelets and white blood cells
Headache
Fever and/or chills
Shortness of breath
For all immunosuppressive medications, be aware of the signs of infection, and notify your child's transplant team right away:
Pain, tenderness, redness, or swelling
Sweats or chills
Wound or cut that won’t heal
Red, warm, or draining sore
Sore throat, scratchy throat
Sinus drainage, nasal congestion
Persistent dry or moist cough lasting more than two days
Nausea, vomiting, diarrhea
Flue like symptoms (chills, aches, fatigue)
Trouble urinating
Bloody, cloudy or foul-smelling urine
Black, tarry stools