What to Know About Medicines Before and After Transplant
To help prevent problems and keep your child’s liver healthy, you need to know your child’s current medicines. The Transplant Team (including the physicians and nurses) will work with you to improve your understanding of your child’s medicines and the importance of giving them as directed. The team will help you to decide on the best times to give your child his/her medicines. To ensure that the medications are given correctly, we need your help in supervising administration of ALL medicines. Many pre-teen and adolescents will say that they are taking their medicines, but they are not. We will work with you and your child beginning at age 10 to develop strategies to help them develop independence, but until the team and you agree together that they are able to take medicines without supervision, we ask for your help in making sure all doses of medicines are taken. Even though they may feel that they are at an age to understand the importance of the medicines and are responsible, it is critical to your child’s health and wellbeing that you, as a parent (caregiver) still supervise. You are encouraged to keep a list with you of all current medicines
(this can be either a hand-written list or a printed list such as
the one we hand out in clinic) that your child is taking. This list
should also include any over-the-counter, herbal medicines, or
supplements. Since medicines are frequently adjusted or changed
to meet the medical changes of your child, it is important that you
update your list of medicines after each change (especially when these are
done between clinic visits). Changes will be necessary before you finish all the medicines in a
bottle. There will be times that the medicine instructions you have been given over the phone
or in clinic are not the same as what is written on the prescription bottle. Your medicine list
should include the following:
Name of the medicine.
Concentration of the medicine if it is a liquid or compounded medicine. Examples:
Dose of the medicine. Example: give 10 mg. Don’t just list 1 ml. Many of the compounded
medicines are compounded differently by pharmacies. It is important to note that they may mix (compound) it differently than what we have requested. If you get a new prescription, please let us know the concentration on the bottle. As an example, we may request a concentration of 60 mg/ml, but the pharmacy may make it up as 50 mg/ml.
How often the medicine should be taken. Example: 10 mg daily (or 1 time per day) or
10 mg twice a day or every 12 hours.
Important Information to Know About the Medicines:
The brand name and generic name of the medicine
When to give each medicine
How to give them
Reason for giving that medicine to your child
Major side effects from the medicine
What food or other medicines should be avoided when giving the medicine
What to do if you miss a dose
When and how to order refills
What the medicine looks like
You Should Know the Following About Storing Medicines:
Store in the original containers.
Keep the medicines tightly capped.
Store them in a cool, dry place away from direct sunlight.
Do not store in an area that has too much moisture such as the bathroom. Moisture can
Keep all medicines out of the reach of children.
Do not let the liquid medicines freeze if they require refrigeration.
Do not store the medicine in the refrigerator unless instructed by the pharmacist.
Give the medicine as directed each day at the same time.
Do not crush or cut the tablet, capsules or caplets unless instructed to do so.
You Should Call the Transplant Team About the Medicines if:
Your child cannot take his/her medicines for any reason.
Your child develops a rash, fever, nausea, vomiting, diarrhea or any unusual symptoms.
You are not sure what dose to give your child.
The medicine looks different when you picked it up from the pharmacy than it did other
times you picked it up (received it) from the pharmacy.
You believe your child needs an over-the counter medicine – pain relievers, cold
Another physician prescribes or changes any of your child’s medicines.
You have any doubts or questions about your child’s medicines.
You need a refill of any of your child’s medicines.
You Should Be Aware of the Following Related to Refills of Your Child’s Medicines:
Refills should be obtained at your child’s clinic visit. Ask the transplant team for any
prescriptions which will run out before the next clinic visit.
Plan ahead by always checking prescription bottles for
the number of remaining refills. If in doubt, ask the pharmacist.
Call the pharmacy to request refills at least one week
before the medicines are gone. Most mail order pharmacies require at least two weeks processing your child’s medicine refill. Prescriptions can be written for either a one-month or a three-month supply. The choice is
determined by the patient’s insurance coverage.
Mail order pharmacies provide a three-month supply. You will pay a reduced co-pay for the
three-month supply, which could help reduce out-of-pocket expenses. Use of mail order pharmacies depends upon your insurance coverage. Mail order pharmacies require a written prescription which can either be mailed by you or
If you use a mail order pharmacy, you also will need a local pharmacy for short-term
medicines. When you start a medicine, fill it locally for one month and then mail a prescription to the “mail-order pharmacy” which will start delivery in time for when you would run out in one month.
Most non-liquid medicines are good for one year. Many liquids are only good for one to
four weeks after compounding. The pharmacist will inform you how long a liquid medicine
is effective. ALL medicines should be taken as directed by the transplant team.
If your child is planning to be away from home during medicine time, you should bring his/
her dose(s) of medicine with you. This is to ensure you stay on time with your medicine.
You should always bring your child’s medicines with you when traveling, whether it is a
short or a long trip. When traveling by plane, ALWAYS carry the medicines in your carry-
on bag instead of packing them in your checked bag. For liquid medicines, put all original
bottles in a zip-lock bag for inspection.
If you need a refill of medicine before your child’s next clinic visit, you should call the
Pediatric Liver Transplant office at (800) 395-6431. You will need to leave the following information with the clerical staff or on the answering machine: Your child’s name.
Your child’s date of birth
The name and dosage of the medicine that is needed for refill
How much of the medicine you have left
The pharmacy’s name and phone number so we can call in the
A telephone number where you can be reached between 8:00 a.m. and 4:30 p.m.
Please allow a minimum of three days for refill requests to be processed. While a sincere
effort will be made to process requests in less than three days, it can not be guaranteed. If
your child’s medicines are a compounded liquid, your pharmacy will need at least TWO
day notice and often more
. Compounding medicines takes several hours to process.
The Pediatric Liver Transplant office can only refill those medicines that have been
prescribed by our office. For all other medicine refills, you will need to contact the physician’s office that ordered the medicine for your child. This is to ensure that the medicines and their potential side effects are being monitored appropriately. Also, if your child is not responding to the medicine, they may need adjustments that we can’t do in the transplant clinic. An example would be medicines for asthma.
What You and Your Child Need to Know about the Medicines
The success of a transplant depends on the proper use of anti-rejection medicines. For this reason, your child cannot be discharged from the hospital until you, as family members, can demonstrate a basic understanding about all the medicines. It is important to give all of your child’s medicines exactly as they are prescribed and on time in order to protect the new liver from rejection. Sometimes you will be away from home when it is time to give your child the anti-rejection medicines. Therefore, you will need to get into the habit of carrying the medicines with you so that your child’s medication schedule will not be interrupted. Some of the medicines require refrigeration, so a cooler with ice may be necessary for transportation. As your child grows and becomes older, he/she will be taught this same information in order to care for themselves as adults. For the teen/adolescent recipients, they will be taught how to set up their medicine planner with the discharge medicines before leaving the hospital for The transplant office should verify that it is safe to take ANY medicine other than the ones
prescribed to you by your transplant physician before giving them to your child. Many of the
anti-rejection medicines have interactions with other medicines. (We give you a list of some
of these interactions in clinic). These interactions can cause the anti-rejection medicines to be
either too strong or too weak and can lead to a rejection episode. The ONLY thing that can be
given without prior approval from the nurse coordinator is Tylenol. This includes any form of
herbal supplements, weight loss, and over-the-counter medicines.
Never stop giving medicine, skip doses, or decrease the
dosage of the prescribed medicines on your own.
so can risk your child’s health. If your child has missed
any of the doses of his/her medicines, contact your nurse coordinator immediately for instructions. Do not try to catch up by taking two doses of the medicine. When in doubt as to what to do, give the transplant office a call. The reality is that children may vomit after taking their
medicines. Here are guidelines to follow if this should occur:
If your child vomits within 30 minutes after the dose, the entire dose must be given again.
If your child vomits within 30 minutes to one hour after the dose, half of the dose must be
If your child vomits more than one hour after the dose, there is no need to give the dosage again.
If your child cannot keep any medicines, food or fluids down, you must contact the
Prescription coverage: Sustained and consistent use of the anti-rejection medicines is
essential to maintaining a healthy liver and is very expensive without the help of insurance
coverage. Therefore, you must maintain coverage for these medicines at all times. If you have
questions about your insurance coverage, please contact either the transplant social worker or
financial coordinator.
Anticipated Cost of Medicines – Per Month
Proper use of prescribed medicines is one of the most important ways for a patient to maintain
a healthy liver. Unfortunately, these medicines are very expensive – but necessary. It is very
important to maintain your insurance coverage for your child’s medicines. Lapse in coverage
can be extremely costly to you.
If you have concerns about your insurance coverage for your
child’s prescriptions, you are asked to contact the transplant social worker and financial
coordinator who will assist you in developing a plan.
Anti-Rejection Medicines
Your child will take at least one anti-rejection medicine for the rest of his/her life. Anti-rejection medicines are also called immunosuppressive drugs. These drugs decrease the body’s ability to fight off what it sees as foreign. The medical team attempts to minimize the amount of immunosuppression while preventing rejection. This allows an appropriate balance for your body to fight infection without rejecting the transplanted organ.
Since the chance of rejection is highest immediately following the transplant surgery, patients receive the greatest number of drugs and in higher dosages shortly after surgery. As the time after surgery increases, it is likely a patient will take fewer drugs and in smaller doses. By the end of the first year, many patients remain on only one anti-rejection medicine.
There are four types of anti-rejection medicines that are commonly used. Each type works
differently in the body to prevent rejection, but all affect T-cell (lymphocytes) function.
Patients often take a combination of the following:
Tacrolimus (Prograf) or Cyclosporine (Neoral, Gengraf or other generics)
Mycophenolate Mofetil (CellCept) or Azathioprine (Imuran)
Tacrolimus (Prograf ) or Modified Cyclosporine (Neoral, Gengraf or Other Generics)
Tacrolimus and Cyclosporine are similar in their effects on white blood cell function; they are called calcineurin inhibitors. Your child will take either Tacrolimus or Cyclosporine, but will never take both at the same time. Each drug is taken twice a day, 12 hours apart. Infants and small children may require three doses per day of the medicine because of their higher rate of metabolism. As the time from transplant increases, they can eventually move to twice a day dosing. It is important to maintain therapeutic blood levels as this is the only way to tell if your child is on enough medicine. Blood concentrations are measured at their lowest level, which is referred to as a “trough level.” For example, if the Tacrolimus is taken at 8:00 p.m. on Monday night, you need to have your child in the lab on Tuesday at 8:00 a.m. to have the blood drawn. Once the blood has been drawn, you should give your child his/her morning dose of Tacrolimus. Measuring trough levels reflects whether adequate blood levels are being maintained. Based on this trough level, the transplant team will adjust the medicine. When taking Tacrolimus or Cyclosporine your child should not eat or drink grapefruit (juice), or Valencia orange juice (used to make orange marmalade), since it increases the amount of the medicine absorbed into the blood stream. There are several tropical fruits that should not be consumed including mango, kiwi, star fruit, pomegranate, pomelo, passion fruit, and Goji berries. The following juices and fruits that are OK to use include grape, orange, apple, cranberry, tangerine and pineapple.
Tacrolimus (Prograf ) and Generic Formulations
If cost is an issue and you or your insurance state that your child must change to a generic
brand, the following actions need to be taken:
Notify the Transplant Office before the change.
Obtain drug levels within two weeks of beginning the new drug.
Do not interchange different generic brands.
If your child takes the capsules, he/she must take them whole.
Do not cut, crush or chew them.
Most common is twice a day, 12 hours apart. Infants and small children may require three times a day, eight hours apart.
The medicine must be given on time.
Post-transplant lymphoproliferative disorders The side effects of Prograf are usually dose-related. They generally get better or disappear as the dose is lowered over time. When your child comes to the clinic or has local lab studies drawn, we will continue to monitor the level of Prograf in the blood and make adjustments in the dosage based on these levels.
Higher doses are usually required shortly after transplant or after an episode of rejection Modified Cyclosporine (Neoral, Gengraf, or Generics)
Neoral and Gengraf are two brands of modified cyclosporine that are frequently used. There
are several other generic brands that are available by manufacturers such as Pliva and IVAX.
If cost is an issue and you or your insurance state that your child must change to a generic
brand, the following actions need to be taken:
Notify the Transplant Office before the change.
Obtain drug levels within two weeks of beginning the new drug.
Do not interchange different brands.
Dose Strengths:
If your child takes the capsules, they must take them whole. Do not cut, crush or chew them.
The medicine must be given on time.
Post-transplant lymphoproliferative disorders Higher doses are usually required shortly after transplant Mycophenolate Mofetil (CellCept) or Azathioprine (Imuran)
These drugs work by inhibiting production of white blood cells (WBC). Many patients are weaned off CellCept by the end of the first year after a transplant. Azathioprine is not usually a first line drug, but may be used if the patient is unable to tolerate CellCept or has an autoimmune disease.
Mycophenolate Mofetil (CellCept)
If your child takes the capsules, they must take them whole. Do not cut, crush or chew them.
The medicine must be given on time.
Post-transplant lymphoproliferative disorders Dosing is according to weight and WBC/platelet counts. Dose may be adjusted for infections or low WBC/platelet counts Usually given with either Tacrolimus or Modified Cyclosporine Azathioprine (Imuran)
Can be compounded by a specialty pharmacy (this is not advised as levels are too variable) Post-transplant lymphoproliferative disorders Usual dose varies with weight and the reason it is being used.
Use with Tacrolimus or Modified Cyclosporine Prednisone
Prednisone is a generic name for a corticosteroid used as anti-inflammatory drugs. We use this medicine to help prevent rejection from occurring in the first few months after transplant. Prednisone is usually weaned off within three to six months after transplant unless your child has an autoimmune disease. It is used again with episodes of rejection.
This medicine can be crushed and mixed with liquid or food. It must
be taken with food to prevent stomach upset or ulceration.
Usually only once a day in the outpatient setting; sometimes every Swelling of face (moon shape), hands and feet The side effects may be more noticeable during the tapering process.
Steroid is administered as IV Methylprednisolone immediately following the transplant instead of oral prednisone. At first, it is given every six hours. Before discharge, dosing will convert from IV to oral tablets.
Decreasing the dose should only be done under the care of the
transplant team.
Sirolimus (Rapamune)
Sirolimus is usually given by itself, but may be given in association with Tacrolimus, or Modified Cyclosporine; in general, it should not be used with Mycophenolate. It is not used in the immediate post-transplant period because of an increased risk of forming a blood clot in the hepatic artery.
Dose adjustment is made based on drug levels.
Medicines to Prevent or Treat Infections
After transplant, patients are at greater risk of infection. These infections can come from bacteria, fungi or viruses that are normally found in the environment. Since transplant patients take anti-rejection medicines that lower their resistance to infection, they also are given several medicines to help prevent infections.
Sulfamethoxazole/Trimethoprim (brand names: Bactrim, Septra, Cortimoxazole)
Is given for a total of 30 days after transplant If your child is allergic to sulfa, a different medicine called Pentamidine inhalation will be given as prevention. This medicine can cause an increased sensitivity to sun. Sunscreen should be used.
Swish and Swallow (S/S) 400,000 Units (4 mls) Is given for a total of 30 days after transplant, but may be given longer if your child is experiencing symptoms of “thrush” in the mouth.
In the liquid form, swab the mouth with the liquid or swish and swallow. The tablet form should be kept in the mouth until it is gone, without chewing.
Do not allow your child to eat or drink for at least 30 minutes after the dose.
Is given for a total of 30 days after transplant Anti-Viral
CMV (cytomegalovirus) is a common herpes virus most people have had as a child. The usual symptoms of CMV infection are “flu like symptoms.” Many younger children have not been exposed to CMV and are at great risk of developing the infection after a transplant. Before transplant, patients have a blood test to identify the presence of an antibody to CMV which indicates that they have previously had the infection. The results of this test (and a similar test given to the organ donor) determine which anti-viral medicines are prescribed to prevent CMV or other herpes infections. The most commonly used is Valganciclovir (Valcyte). valganciclovir (valcyte)
Dose Strength:
Is given for a total of 30 to 90 days after transplant Acyclovir (Zovirax) or valacyclovir (valtrex)
This medicine is given after transplant to prevent and treat viral infections. A common reason
for giving this drug after transplant is to treat the virus that causes chickenpox.
Used once per day and up to five times per day as treatment Is given depending on need of this medicine Other Medicines
Frequently, it may be necessary for children to take medicines that are new to them. Anti-rejection medicines and surgery can cause a patient to have high blood pressure, high blood sugars, stomach problems, and electrolyte imbalances. Theses conditions can be temporary or permanent. The following are examples of medicines that may become necessary. Medicines for Electrolyte Imbalances
Sometimes medicines can cause imbalances in the body’s electrolytes, the substances needed by your body to maintain fluid balances and many other functions. Sodium, potassium, chloride, magnesium, calcium, and phosphorus are some of the electrolytes found in your body. When electrolytes are higher or lower than normal range, medicines can be used to correct the imbalance.
Magnesium Oxide/Magnesium Gluconate (Magonate)
Magnesium oxide/Magonate is used to treat a low magnesium level.
Is given depending on need for this medicine Sodium Bicarbonate, Sodium Citrate, Citric Acid (Bicitra)
Dose Strength:
Used once per day and up to five times per day as treatment Is given depending on need for this medicine Low levels of sodium, potassium, and/or calcium Anti-Hypertensive Medicines (Blood Pressure)
High blood pressure may be a result of the surgery and the anti-rejection medicines. The high blood pressure may be a short-term or a long-term problem. Not controlling the high blood pressure can lead to long-term effects on the kidneys and other organs. The Pediatric Nephrology Transplant team will help manage the anti-hypertensive medicines. Before discharge from the hospital, you will be taught how to take your child’s blood pressure. Most patients are sent home with a blood pressure machine. It is important to record the blood pressure readings and contact the transplant team with blood pressures that are out of the ideal range. If the blood pressure remains elevated even with the current medicine, adjustments may be necessary. The blood pressure record should be reviewed at each clinic visit by the transplant team.
There are different potential anti-hypertensive medicines that could be used to control the high blood pressure. There might be time when more than one of these medicines may be used at once.
Isradipine (DynaCirc)
Used once per day and up to three times per day Is given depending on the blood pressure readings Amlodipine (Norvasc)
Dose Strength:
Is given depending on the blood pressure readings Lisinopril
Dose Strength:
Some patients after having a liver transplant will still need to use a water pill (diuretic) such as furosemide (Lasix). The drug will be decreased and stopped as swelling decreases (ascites and swelling in the legs). It can take several weeks to months for the swelling to go away. Acid-Reducing Medicines
These medicines protect the digestive system and will be prescribed as long as your child needs them. Once some of the medicines (Prednisone or CellCept) are tapered (decreased), patients often don’t need anti-ulcer medicines and will be asked to stop using them. Examples of these medicines include Zantac, Prevacid, Pepcid, Protonix, and Nexium. These medicines come in liquid or tablet/capsule form. Medicines to Prevent Clotting
Blood thinners such as a baby aspirin will be given to your child to prevent the blood vessels to the liver from clotting after transplant. A baby aspirin is usually taken for three months after transplant. Baby aspirin must be given with food or after meals to help prevent stomach upset.
Medicines to Increase Bile Flow
Ursodiol (Actigall)
This medicine may have been started pre-transplant to help with itching (pruritis). After
transplant, this medicine is used to keep the bile thin so it does not clog up or obstruct in the
common bile duct. Actigall is usually used for three months after transplant or longer if there
have been problems with the bile ducts. There are very little side effects associated with this
Compounded liquid – 25 mg/ml, 50 mg/ml, 60 mg/ml For most children after transplant, it is usually only given for three months. For children that have developed a bile leak or bile stricture (narrowing), the medicine will be used long-term.
Medicines to Treat Hyperglycemia/Diabetes
Tacrolimus, Cyclosporine, and Prednisone can cause blood sugar to increase. Elevated blood sugars can sometimes be managed using an oral medicine such as glipizide, glyburide or several others. If oral medicines do not manage the elevated blood sugar, insulin may be necessary. Elevated blood sugar may be a short-term or a long-term problem. Long-term management of diabetes is managed through the patient’s local physician or by a diabetic team.
As Prednisone and Tacrolimus are decreased, blood sugars may come down. Therefore, it is important for you to closely monitor your child’s blood glucose levels. Monitoring blood sugar levels at home requires a machine (glucometer) which is prescribed at the time of discharge. You will be instructed on the proper use of the glucometer and how to record and treat your child’s blood sugar levels. It is important to bring the blood sugar record to all clinic visits to be reviewed by the transplant team.
Over-The-Counter (OTC) Medicines
There are many medicines that do not require a prescription and can be purchased over the counter. These drugs are used to treat minor ailments and are generally safe to use. However, there are some OTC medicines that may cause problems in a post-transplant patient.
In selecting OTC medicines for these minor conditions, it is important to avoid any medicine that contains ibuprofen or naproxen because they can interact with anti-rejection medicines and cause kidney failure. Examples that contain ibuprofen or naproxen and should be avoided include Advil, Motrin, Naprosyn, or Aleve. The only medicine that can be used for fever or discomfort is Tylenol. It is important to read the labels on the medicines to know the content and dosage contains ibuprofen or naproxen including Advil, before giving these medicines to your child.
Nutritional Supplements
It is generally recommended that your child receive a multivitamin supplement after transplant. This is particularly important if your child’s nutritional transplant recipients avoid taking any type of diet pill or herbal products, status was poor before transplant, had a difficult recovery with complications following surgery, or if he/she has poor eating habits. If your child requires something more than a multivitamin, the dietitian Many of these products interfere with the transplant medicine and could will recommend this to you. In Michigan, it is also common to require a Vitamin D supplement because St. John’s Wort because of its serious health risk.


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Primary Immunodeficiencies MEGAN A. COOPER, PH.D., The Ohio State University College of Medicine and Public Health, Columbus, Ohio THOMAS L. POMMERING, D.O., Grant Family Practice Residency, Columbus, Ohio KATALIN KORÁNYI, M.D., Children’s Hospital, Columbus, Ohio Primary immunodeficiencies include a variety of disorders that render patients more susceptible to infections. If left untreate

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