Chapter 12: Medication
After transplantation, children require medications to prevent rejection. These immunosuppressant agents must be taken for the remainder of your child’s life. Initially, most children receive “triple therapy,” a three-drug combination with Cyclosporine or Prograf, or Cellcept and Prednisone. Each of the medications has some side effects which will be discussed with you at the time of discharge.
Always administer the medication as directed. If you have questions about the times that the medicines are prescribed or wish to change them, be certain to check with the transplant physician or clinical nurse specialist first. Do not discontinue any medication without being instructed to do so. Contact your physician if you notice any physical or mental changes in your child. Do not try to make up for missed doses unless instructed by your physician. Due to the frequent medicine changes, remember to follow the medication sheet or verbal instructions from the physician and not what is written on the bottle. Ask for prescription refills days before you run out of medicine. Keep all medicine out of the reach of children.
Always carry an extra bottle of medicine with you when you travel. Pack the medicine in carry-on luggage, so you will have it in case your luggage is lost.
See the section on Discharge Needs and Life After Transplant for additional information on dental care with these medications, immunizations, childhood illnesses, etc.
At the end of this chapter are some sample medication schedules to help keep track of the times the medications should be administered.
Immunosuppressants
Cyclosporine
Cyclosporine prevents the body’s immune system from attacking the transplanted organ. Cyclosporine is taken in the morning and at night with 12 hours between each dose. Cyclosporine comes in a liquid medicine with an oil base and a gelatin capsule. The liquid preparation should be given in another liquid (chocolate milk or juice) and in a glass container to mask the strong taste. Make sure the entire dose is taken. Do not use plastic or Styrofoam for mixing the medicine because it will absorb the Cyclosporine. Do not mix the dose in advance because it will form clumps. A syringe is provided with the medicine; after each dose, dry the outside of the syringe with a paper towel. Do not rinse the syringe with water.
Give this medication to your child at the same time each day because it affects the blood levels. For example, about six hours after your child takes the medication, the blood level rises to its peak. Twelve hours after the medication is ingested, the blood levels are at its lowest level. Therefore, blood levels drawn after the 12-hour period provide the most accurate information for determining the effect of the medication and for adjusting the dosage, if necessary.
Cyclosporine levels are drawn daily while children are hospitalized to monitor drug levels. After discharge, the medical team needs to continue monitoring the level. On the day of clinic visits, do not give the morning dose of Cyclosporine, instead bring it with you to the hospital. After blood work is obtained, give the dose. If a dose is missed, give the next scheduled dose at the regular time. Do not administer a double dose.
Side effects may include high blood pressure, abnormal kidney function, tremors, swollen gums and increased hair growth on the face and arms. The dose will be adjusted to decrease the symptoms as much as possible. Vomiting and diarrhea may interfere with Cyclosporine Absorption and cause the Cyclosporine levels to drop quickly. Call the doctor if these symptoms persist longer than 24 hours. Avoid the following medications if your child is taking Cyclosporine: Ibuprofen (Advil or Motrin) and Erythromycin.
Dose________________________________________________
Last Date Dose Adjusted _______________________________
Frequency ___________________________________________
Time Schedule________________________________________
Important:
*No double doses
*Avoid Ibuprofen (Advil or Motrin) and Erythromycin
* Give medications at same time each day
* No dose administered before blood drawn at clinic visit
Neoral (Cyclosporine)
Neoral is a new preparation of Cyclosporine that is more easily absorbed than the older formulation. The result is that blood levels of Neoral should remain more stable and more of the drug should get into the body.
Neoral is distributed as an oral liquid or a soft gelatin capsule of 25 mg or 100 mg. The oral liquid should be mixed with room-temperature orange or apple juice. Do not bite or chew the capsules.
Neoral is taken twice a day, 12 hours apart. On the morning of clinic visits, do not give the morning dose; hold until blood work has been obtained. (See explanation of blood levels under Cyclosporine).
The usual side effects may include a slight hand shaking or tremors, swollen gums, increased body hair growth and an upset stomach.
Dose_______________________________________________
Last Date Dose Adjusted_______________________________
Frequency___________________________________________
Time Schedule_______________________________________
Important Facts:
* No double doses
* Avoid Ibuprofen (Advil or Motrin) and Erythromycin
* Give medication at same time each day
* No dose administered before blood drawn at clinic visit
Prograf
Prograf is an immunosuppressant medication used to prevent rejection. It is 10 times more potent than Cyclosporine, thus requiring a smaller dose to achieve the same effect. Prograf is taken twice daily, 12 hours apart. It should be taken on an empty stomach, whenever possible. It is available in 1 mg and 5 mg capsules. Because there is currently no pediatric preparation available, you will be taught to separate the capsules and prepare the appropriate dose.
As mentioned with Cyclosporine, the medication levels are drawn daily while children are hospitalized to monitor drug levels. (See explanation of blood levels under Cyclosporine). On the day of clinic visits, do not give the morning dose of Prograf, instead bring it with you to the hospital. After blood work is obtained, give the dose. If a dose is missed, give the next scheduled dose at the regular time. Do not administer a double dose.
The most common side effects include neurologic symptoms, such as difficulty sleeping or shaking hands. Prograf can also cause high blood pressure, but it seems to be less of a problem for patients than Cyclosporine. It may also cause diarrhea. Avoid the following medications when your child is taking Prograf: Erythromycin and Phenytoin.
Dose ________________________________________________
Last Date Dose Adjusted_________________________________
Frequency ____________________________________________
Time Schedule _________________________________________
Important Facts:
- No double dose
- Give on an empty stomach
- No Erythomycin or Phenytoin
- No dose administered before blood drawn at clinic visit
Cellcept (Mycophenolate Mofetil)
Cellcept is a new immunosuppressant used in combination with either Cyclosporine, Neoral or Prograf to treat rejection. Cellcept specifically affects the T and B cell lymphocytes that are responsible for turning on rejection. It is available in an oral capsule and is administered two or three times a day. Cellcept may be taken with or without food.
The major side effects include diarrhea, increased susceptibility to infection, vomiting and a decrease in the white blood cell count.
Dose ________________________________________
Last Date Dose Adjusted ________________________
Frequency ____________________________________
Time Schedule _________________________________
Azathioprine (Imuran)
Imuran prevents the body’s immune system from attacking the transplanted organ. It is usually only administered during the hospital stay. Imuran works with Cyclosporine, Prograf and Prednisone to prevent rejection. Imuran is supplied as a small eight-sided, yellow scored tablet and is given once a day, usually in the evening. The major side effect is a decrease in the white blood cell count. Other side effects include loss of appetite, nausea and vomiting, unusual bleeding or bruising and bloody dark stools. If this is noted by the medical team on daily lab work, the drug is discontinued. It may also decrease the body’s ability to fight infection.
Dose _________________________________________
Last Date Dose Adjusted _________________________
Frequency _____________________________________
Time Schedule _________________________________
Prednisone (Deltasone, Liquid Pred)
Prednisone is a steroid that works with Cyclosporine or Prograf to prevent rejection. It comes as an oral liquid or a small pill, which can be crushed, swallowed or dissolved in a small amount of liquid before giving it to your child. Prednisone can cause an upset stomach if given on an empty stomach. When given in high doses, prednisone can temporarily interfere with normal growth. Over the next few months, the medical team will decrease the steroid dose until your child only takes the medication every other day. At this point, children begin to have rapid growth. Large doses of steroids will also increase their appetite. For most children who have not eaten very well before transplantation, this may be a blessing. However, Prednisone causes some children to retain water. To avoid this problem, limit the amount of salt in their diet (avoid salty chips, crackers, canned soups and salt on the table). Preteens and teenagers may notice an increase of acne. This is due to increased activity of the surface glands in the skin and may cause increased sweating at night. Your child may also experience mood swings. Prednisone may slow the rate of healing and decrease the body’s ability to fight infection.
Dose _______________________________________________
Last Date Dose Adjusted _______________________________
Frequency ___________________________________________
Time Schedule _______________________________________
Important Facts:
- Do not give on an empty stomach
- Limit salty foods
OKT3 (Murmonab)
OKT3 is a monoclonal antibody used to treat episodes of acute rejection that are not responsible to an increased dose of steroids. It is usually given once a day for 10-14 days. OKT3 is given as an injection through a vein. Prior to each dose of OKT3, your child will be given a dose of Tylenol and Benadryl to minimize the side effects. Most children experience “flu like symptoms”; (i.e., fever, headache, nausea, chills and muscle aches) after the first three doses. A few children may get fluid in the lungs. A chest x-ray will be obtained prior to the first dose to make sure the chest is clear.
Most patients are hospitalized for the entire course of therapy.
Dose _____________________________________________
Last Date Dose Adjusted _____________________________
Frequency _________________________________________
Time Schedule _____________________________________
Diuretics
Aldactone
Aldactone is a mild diuretic that causes an increase in urine output. Aldactone is used to treat fluid retention (ascites) and/or high blood pressure. If dispensed in a liquid preparation, the suspension should be refrigerated and shaken before it is given.
The usual side effects include diarrhea and cramping, rash and sensitivity to the sun.
Dose ___________________________________________
Last Date Dose Adjusted ____________________________
Frequency ________________________________________
Time Schedule ____________________________________
Important:
- Keep refrigerated
Lasix (Furosemide)
Lasix is a strong diuretic that also increases urine output. It is used to treat fluid retention and/or high blood pressure. It is usually taken once or twice a day. If your child is taking lasix twice a day, the second dose should be given in the late afternoon to avoid going to the bathroom all night. It comes in a 20 mg tablet or in a liquid preparation. The side effects include dehydration, loss of appetite, constipation, weakness and muscle cramps.
Dose ____________________________________________
Last Date Dose Adjusted ____________________________
Frequency ________________________________________
Time Schedule ___________________________________
Antihypertensives
Nifedipine (Procardia)
Nifedipine is used to control high blood pressure. It increases the supply of blood and oxygen to the heart. Nifedipine is usually taken one or three times a day. Nifedipine comes in a soft gelatin capsule; long-acting, extended release tablet; or a liquid preparation. Possible side effects include headaches, aching joints, flushing, swollen gums and dizziness. Do not crush, break or chew the extended release tablets. Good dental care – brushing and flossing – is important to minimize sore gums.
Dose ____________________________________
Last Date Dose Adjusted _____________________
Frequency _________________________________
Time Schedule _____________________________
Important Facts:
- Do not crush, break or chew extended release tablet
- Good dental care, including extra visits to the dentist
Antacids
Pepcid
Pepcid, Mylanta or other antacids may be prescribed to buffer the increased stomach acid caused by the Prednisone. When the dose of Prednisone is decreased, the antacids will be discontinued.
Dose ______________________________________________
Last Date Dose Adjusted ______________________________
Frequency __________________________________________
Time Schedule ______________________________________
Antibiotics/Antivirls/Antifungals
Co-Trimoxazol (Bactrim)
Bactrim (Trimethoprim and Sulfamethoxole) is an antibacterial combination drug. It is prescribed to transplant patients to prevent serious pneumonia (pneumocystis carnii) that immunosuppressed patients are at risk of contacting. It is prescribed as a suspension or a tablet and is usually administered three times a week – Monday, Wednesday and Friday. Side effects include vomiting, anorexia, allergic rash, anemia and sun sensitivity. Encourage your child to drink plenty of fluids.
Dose_______________________________________
Last Date Dose Adjusted ________________________
Frequency ____________________________________
Time Schedule ________________________________
Important Facts:
- Drink plenty of fluids with dose
- Avoid sun exposure
Acyclovir (Zovirax)
Acyclovir is an antiviral drug used to help prevent and/or treat infections such as herpes simplex, Varicella zoster (chicken pox), EBV or CMV. Acyclovir comes in a 200 mg capsule and a suspension. Although side effects are rate, they do include fever, headache, dizziness and hair loss. Some patients report problems with nausea, vomiting and diarrhea. Take the medication with food or milk.
Dose ___________________________________________
Last Date Dose Adjusted ___________________________
Frequency _______________________________________
Time Schedule ____________________________________
Important Fact:
- Take medication with food or milk
Ganciclovir (Cytovene)
Ganciclovir is an anti-viral agent that prevents the replication of herpes viruses. It is specific for CMV, EBV, herpes simplex and Varicella (chicken pox) viruses. Side effects include neutropenia (decreased white blood cell count) and enemia. Usual treatment for the CMV infection is 5 mg/kg IV twice a day for two weeks, then 5 mg/kg IV once a day for one to two weeks. It is also manufactured as an oral capsule, but the dose may be a problem for pediatric patients because of the inability to split the capsule.
Dose _________________________________________
Last Date Dose Adjusted _________________________
Frequency ____________________________________
Time Schedule ________________________________
Cytomegalovirus Immune Globulin (Cytogam)
Cytogam is given to treat or prevent CMV infections in transplant patients who are CMV negative and receive a CMV positive donor organ. If your child is receiving Cytogam to prevent CMV, it will be administered every two weeks for five doses and then once a month for two doses. It is administered as an IV infusion. The usual side effects include flushing, chills, fever, nausea and vomiting. Prior to the first dose your child will be given Tylenol and Benadryl to prevent any problems.
The MMR vaccination should not be given to your child for at least six weeks after the last dose of Cytogam. Prior to discharge, arrangements will be made with a home care company. Prior to discharge, arrangements will be made with a home care company to provide the infusion in your home.
Dose ________________________________________
Last Date Dose Adjusted ________________________
Frequency ____________________________________
Time Schedule ________________________________
Important Fact:
- No MMR vaccine for at least six weeks
Intravenous Immune Globulin (IVIG)
IVGA is used to prevent or treat CMV infection in transplant patients who are CMV negative and receive a CMV positive donor organ. For prevention, your child will receive a dose within 72 hours of the transplant, on Post Operative Day 5 (POD5) and POD7. Then a weekly dose will be administered by IV for eight weeks. If IVIG is used for treatment, Ganciclovir is given along with it. Arrangements will be made for a home care company to provide doses of IVIG at home after discharge.
Occasionally, a serious reaction or side effect, called anaphylaxis, can occur within an hour of infusion of the drug. These symptoms can be relieved by decreasing how fast the drug is infused or temporarily stopping the infusion. Your child should not receive the MMR immunization for at least six weeks after the last dose IVIG.
Dose _______________________________________
Last Date Dose Adjusted _______________________
Frequency ___________________________________
Time Schedule _______________________________
Important Fact:
- No MMR vaccine for at least six weeks
Nystatin
Nystatin is an antifungal medication used to prevent thrush, an oral fungal infection. Thrush appears as a white coating on the tongue or cheeks or as a diaper rash. Nystatin is prepared as an oral liquid and must always be shaken before it’s given. If other medications are given at the same time, give Nystatin last. Your child should wait 30 minutes after the dose of Nystatin to eat or drink, since its effectiveness depends on how well the mouth is coated with the medication.
Dose ____________________________________
Last Date Dose Adjusted _____________________
Frequency _________________________________
Time Schedule _____________________________
Important Facts:
- Give Nystatin last in series in medications
- No eating or drinking for 30 minutes after dose
Others
Aspirin
Most children take an aspirin three times a week (usually Monday, Wednesday, and Friday) for six months to a year after transplant to prevent clots from developing in the small blood vessels that go to the liver.
Other medications may be prescribed, but are specific to each child’s condition at the time of discharge.
FEEDING AND MEDICATION SCHEDULES
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