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From the waiting list to the operating room, transplant recipients rely on their transplant team to meet their healthcare needs. "But who will take care of me after I am discharged?" a recipient may worry. While recipients receive the close attention of their healthcare team and family both before and after discharge, they also need to understand how to care for themselves post-transplant. The fact of the matter is that even in the midst of this post-transplant turmoil, multiple opportunities exist for recipients to take control of their health. By understanding the steps toward preventing and minimizing certain side effects, transplant recipients can assume a greater degree of control over their health and their quality of life. Immunosuppressants can cause numerous side effects. These medications include: mycophenolate mofetil (Cellcept®), prednisone (Deltasone®), azathioprine (Imuran®), tacrolimus (Prograf®), cyclosporine (Neoral®, Sandimmune®, SangCya™) or sirolimus (Rapamune®). Often, the frequency or the significance of a side effect is related to the dose of the immunosuppressant as well as the effect upon the immune system. Sometimes side effects can affect the way recipients feel overall. If the side effect causes changes in appearance, it can affect a recipient's self-esteem and the way in which they interact with others. Fortunately, recipients can decrease their risk of developing many of these side effects. Even more importantly, recipients can assume an active role in controlling many of the side effects. This article focuses on those side effects that occur most frequently as well as those which require monitoring.

Osteoporosis

Causes

Although osteoporosis is commonly thought of as a "woman's disease," osteoporosis may occur in both men and women after a transplant. As most adults age, their bone mass gradually dwindles. In the case of osteoporosis, bone mass decreases at an even faster rate than it does under normal circumstances. This makes the bones more brittle and increases the risk of fractures and other forms of bone damage.

Immunosuppressants increase transplant recipients' risk for osteoporosis, especially during the first 6-12 months after a transplant when immunosuppressant doses are high. In addition, post-menopausal female transplant recipients and male transplant recipients with reduced gonadal function are at increased risk of osteoporosis. Prednisone is most strongly linked to osteoporosis followed by cyclosporine and tacrolimus. The degree of risk for osteoporosis largely depends upon the dose and the duration of prednisone use. However, recipients should never discontinue prednisone on their own. Instead, a physician must carefully oversee decreases in prednisone doses to minimize the risk of organ rejection and other adverse events.

Treatment

The necessity for osteoporosis treatment may be avoided with prevention, such as calcium and vitamin D supplementation. Before taking either vitamin D or calcium, transplant recipients need to consult their physician, especially early after transplant when calcium requirements of recipients can vary. Estrogen may also be used as additional first line prevention for postmenopausal women. Alendronate (Fosamax®) may be considered for recipients who have several risk factors or who already have advanced osteoporosis. Calcitonin (Miacalcin®) and sodium fluoride (Luride®) are typically only used in recipients who already have osteoporosis. Transplant recipients may be monitored regularly for signs of osteoporosis with bone density scans as well as tests for estrogen, testosterone, vitamin D and parathyroid levels.

Helpful Tips

• Reduce or eliminate risk factors such as smoking and alcohol consumption.
• Adopt a diet which contains adequate amounts of calcium and vitamin D.
• Perform weight-bearing exercises, such as walking, dancing, low-impact aerobics, weight lifting or simple leg lifts.
• Use caution when performing exercises which jar or stress the bones such as running, high-impact aerobics or intensive weight lifting.

Hypertension

Causes

One of the leading side effects of most immunosuppressants is hypertension. Most immunosuppressants can cause hypertension, also called high blood pressure, when taken on a long-term basis. Cyclosporine is most frequently associated with hypertension, followed by tacrolimus, prednisone, mycophenolate and sirolimus. In some, but not all cases, hypertension is related to the dose of the drug.

Treatment

Hypertension may be easily overlooked by a recipient because it rarely produces symptoms. The diagnosis is usually made after three elevated blood pressure readings. For most people, a reading above 140/90 mmHg indicates hypertension. For recipients with kidney disease or diabetes, the readings used to diagnose hypertension are even lower. When left undetected or untreated, hypertension may lead to a number of serious complications. In some cases, recipients who do not have their blood pressure checked regularly may not be diagnosed until they experience the long-term complications of high blood pressure such as heart, brain, kidney or eye damage. Hypertension is most often treated with blood pressure medications, which are grouped into several classes. Most often, calcium channel blockers such as nifedipine (Procardia®), diltiazem (Cardizem®) or amlodipine (Norvasc®) and diuretics such as hydrochlorothiazide (HCTZ) or furosemide (Lasix®) are prescribed. ACE-inhibitors such as enalapril (Vasotec®), lisinopril (Prinivil®), quinapril (Accupril®), or beta-blockers such as propranolol (Inderal®), atenolol (Tenormin®), or metoprolol (Lopressor®) are also frequently prescribed. Other classes of antihypertensives prescribed include alpha-blockers and vasodilators.

Helpful Tips

• Reduce or eliminate risk factors for hypertension such as obesity, high cholesterol, high salt intake and tobacco use.
• Follow a diet that emphasizes fruits and vegetables, limits salt, sugar and fat, and incorporates adequate amounts of potassium, calcium and magnesium.
• Monitor the impact of these changes by checking blood pressure regularly.
• Take blood pressure medications as prescribed.

Infection

Causes

Infection is a serious concern for all transplant recipients. The surgery involved with transplantation, the invasive tests or procedures that follow, as well as immunosuppressants, place recipients at a high risk for infection. All immunosuppressants increase the risk of infection by altering the immune system¹s ability to recognize and respond to invading microorganisms. One specific way a normal immune system responds to infection is by increasing the number of white blood cells. White blood cells help to kill invading microorganisms. Certain immunosuppressants including mycophenolate, azathioprine and sirolimus may increase the risk of infection because they can decrease the white blood cell count. These medications require that physicians pay special attention to a recipient¹s white blood cell count.

Treatment

To avoid the difficulty of properly diagnosing and treating an infection, prevention is used as the first line of treatment. This includes proper hygiene, such as hand washing, to avoid contact with organisms that can cause infection. Other means of prevention include identifying a recipient¹s risk of developing an infection. If a recipient is at high risk for a viral infection, they may be given an antiviral to prevent infection. For example, if a donor organ tests positive for cytomegalovirus (CMV) and the recipient is negative, the recipient often receives an antiviral medication called ganciclovir (Cytovene®) to prevent symptomatic infection. Acyclovir (Zovirax®), another antiviral, suppresses the symptoms of herpes in recipients who suffer from herpes infection. Trimethoprim/sulfamethoxazole (Bactrim®) is an antibacterial that is often prescribed to prevent certain infections, including Pneumocystis carinii pneumonia (PCP).

Once an infection develops, early detection becomes the key. If you experience any signs of infection, such as a sore throat, productive cough, swelling of lymph nodes, mouth sores, a change in urination or any change which may be symptoms of an infection, notify your doctor. The earlier an infection is detected, the sooner it can be treated to avoid serious complications. Ask your doctor or coordinator for guidelines on reporting infection and for signs of an infection. Depending on the organism causing the infection, most infections are treated with antibiotics or antivirals. Many of the infections mentioned above are treated with the same drugs used to prevent the infection.

Helpful Tips

• Keep in mind that infection may or may not be associated with symptoms. Fever may or may not occur with infection. It is also important to remember that fever may be a sign that something other than infection is occurring such as organ rejection or a reaction to a drug. Transplant recipients should follow their coordinator's instructions regarding a fever or signs of infection. In addition, recipients should consult their physician or pharmacist before taking non-prescription medications for fever because some medications can impair kidney or liver function.
• Notify your doctor if you experience a sore throat, fatigue, productive cough, swelling of the lymph nodes, mouth sores, a change in urination or any other changes which may be symptoms of an infection.
• Practice good hygiene: wash hands frequently, avoid contact with people who are sick, and use gloves and a mask if pet wastes must be handled.
• Ask your doctor what vaccines you can and cannot take: live vaccines (i.e., measles/mumps/rubella, oral polio vaccine, yellow fever and cholera vaccines) should not be given to a transplant recipient.
• Consult with your transplant team and your dentist before any dental procedures to determine whether or not antibiotics are necessary.
• Receive immediate medical attention for bites or large wounds.

Edema

Causes

Edema or swelling is the accumulation of fluid in the body, and it may be the result of a chronic process such as hypertension, heart or liver failure, or it may be a result of an acute change such as an electrolyte imbalance. Prednisone and tacrolimus are most frequently associated with edema. Prednisone tends to cause edema in the face and legs as a result of sodium and water retention, whereas cyclosporine and tacrolimus cause edema (primarily in the legs/ankles) due to reduced blood flow to the kidney.

Treatment

Depending upon the severity, edema can be treated with or without medications. Diuretics or water pills relieve edema by allowing recipients to lose excess water through urination. If mild, edema can be treated with the simple changes described below.

Helpful Tips

• Maintain adequate fluid intake to force fluids through the body. When the body does not receive enough fluid, it retains any fluid that is already there.
• Reduce salt intake.
• Increase physical activity.
• Prevent or minimize edema by avoiding tight fitting clothes, jewelry or shoes.
• Relieve edema by elevating your feet or even the foot of the bed.
• Consult your physician regarding the use of support hose.

Hair Loss

Causes

Immunosuppressants can cause hair loss by weakening hair strands, which increases the hair's tendency to break off at the roots. Tacrolimus is most frequently associated with hair loss for this reason. Azathioprine has also been associated with hair loss.

Treatment

Treatment of hair loss is rarely necessary, as the loss is usually temporary and the hair eventually grows back.

Helpful Tips

• Use a conditioner after shampooing.
• Avoid treatments that may damage the hair such as perming, dyeing, tinting or bleaching to help minimize hair loss.
• Limit your exposure to chlorine (i.e., swimming pools) and the sun.

Bruising

Causes

A bruise develops when a blood vessel close to the skin's surface leaks blood. Bruising most often results from trauma to the skin. When the skin is thin or when a vessel is slow to clot, a person bruises easily. Bruising can be caused by prednisone, azathioprine, mycophenolate and sirolimus. Because prednisone decreases the thickness of the skin, blood vessels are easily damaged, allowing blood to leak from the vessels and form a bruise. Azathioprine, mycophenolate and sirolimus on the other hand can decrease the platelet count in the blood. Platelets are a component of the blood that allows blood vessels to clot.

Treatment

Bruising can be avoided with careful monitoring by recipients and physicians. If the platelet count begins to fall significantly, physicians may decrease the dose of azathioprine, mycophenolate or sirolimus or discontinue the drugs. If the drugs are discontinued, the platelet count may require a week to return to normal.

Helpful Tips

• Report any bruising in unusual areas, such as the chest, inner thighs or inner arms, immediately to your doctor or transplant team.
• Have your bloodwork drawn as recommended by your doctor.

Hyperlipidemia

Causes

Hyperlipidemia (high cholesterol and/or triglycerides) occurs frequently with immunosuppressant use. Long-term use of most immunosuppressants increases lipid levels to some degree. Preliminary data suggests that sirolimus may carry the highest risk of increasing lipids along with prednisone, followed by cyclosporine, tacrolimus, and mycophenolate. Sirolimus tends to increase triglyceride levels. Steroids increase cholesterol production while cyclosporine and tacrolimus decrease the body¹s ability to eliminate cholesterol.

Treatment

Hyperlipidemia can increase the risk of heart disease and is linked to chronic rejection. By reducing the risk or severity of high lipid levels, recipients can significantly reduce their risk of heart disease. Several approaches may be used to manage hyperlipidemia. Rarely are immunosuppressants discontinued for this reason. More often, medications such as simvastatin (Zocor®), pravastatin (Pravachol), atorvastatin (Lipitor®) and others belonging to the "statin" class are selected to control cholesterol levels. These medications are highly effective and generally have relatively mild side effects. Recipients who have high triglycerides (with or without increased cholesterol levels) may be treated with a fibric acid derivative such as gemfibrozil (Lopid®).

Helpful Tips

• Exercise regularly: start slowly and if possible, gradually work toward exercising for 30-45 minutes several days a week.
• Adopt a low fat, low cholesterol diet: some sources recommend no more than 300 mg/day of cholesterol.
• Monitor lipid levels by asking your physician for your total cholesterol, "good" cholesterol (HDL), "bad" cholesterol (LDL) and triglycerides.

Tremors

Causes

A frequent and often worrisome side effect of some immunosuppressants is tremors. Tremors are an uncontrollable trembling or quivering of the limbs which is sometimes accompanied by numbness. Tacrolimus and cyclosporine most frequently cause tremors; however, azathioprine has also been reported to cause tremors. In addition to high blood levels of tacrolimus or cyclosporine, low blood sugar or changes in blood electrolytes or organ function may cause tremors.

Treatment

Recipients should notify their physician if they are experiencing tremors so they can be evaluated for the cause and treated appropriately. If tacrolimus or cyclosporine are identified as being the cause, your doctor may need to decrease the dose of these medications to reduce severe tremors. Some tremors are mild enough that they do not require treatment.

Helpful Tips

• Always report tremors or a change in sensation to your transplant team.
• Some recipients report that simple stretching exercises can temporarily relieve tremors.

Headaches

Causes

Increased blood pressure, infection, organ dysfunction, allergies, stress, caffeine and alcohol are among the numerous potential causes of headaches. In addition, high levels of tacrolimus and cyclosporine can cause headaches. Mycophenolate has also been reported to cause headaches.

Treatment

Managing headaches can be challenging, since multiple causes often exist. The first step toward managing headaches is avoiding risk factors. Some risk factors include caffeine, foods high in tyramine (i.e., cheese) and alcohol. Acetaminophen (Tylenol®) is a safe non-prescription medication that transplant recipients can use for headaches. Recipients should be very careful not to exceed the recommended daily dose listed on the acetaminophen package due to the risk of liver damage with excessive doses. Non-prescription pain medications such as ibuprofen (Motrin®, Advil®) or naproxen (Aleve®, Naprosyn®) can decrease kidney function and should be avoided by transplant recipients.

Helpful Tips

• Try to identify any activities that may serve as triggers for your headaches. A diary may help you keep a record of activities in relationship to your headaches.
• Consult your doctor for guidelines on taking nonprescription medications.
• Report severe or persistent headaches to your doctor immediately, especially if the headache is accompanied by changes in vision, fever, nausea, vomiting or a stiff neck.
• Try sleeping or resting quietly in a dark room to relieve symptoms.

Hair Growth

Causes

Cyclosporine, followed by prednisone and sirolimus, are most frequently associated with excessive hair growth. Excessive hair growth can occur on any part of the body.

Treatment

If bothersome, excess hair can be bleached, trimmed or removed. Creams or lotions, such as Nair®, Neet® or Surgicream® can be used to remove hair. Surgicream is available at most drug stores or beauty supply shops and has worked well for many transplant recipients. Surgicream as well as a few other products are available in formulations specifically developed for sensitive skin.

Helpful Tips

• Seek the advice of your transplant team about the options. Certain hair removal procedures are not recommended for transplant recipients.
• When using a hair removal product, be sure to follow the directions on the box and test the product on a small area first.

Skin Cancer

Causes

Skin cancer may be linked to immunosuppression in general. Because of this, recipients taking any of the immunosuppressants are at an increased risk of developing skin cancer.

Treatment

Skin cancer is most effectively treated with early detection. Physicians may remove any lesions that are suspicious or suggestive of cancer. It is important that recipients pay attention to any changes in the appearance of their skin and report any changes to their doctor immediately.

Helpful Tips

• Wear sunscreen and protective clothing in the sun.
• Notify your doctor as soon as possible of moles which change appearance, bleed or scab over, and sores which do not heal in a few weeks.
• Visit your dermatologist for an annual skin screening checkup.

Overgrown or Bleeding Gums

Causes

Overgrowth of gum tissue (also called gingival hyperplasia) and a tendency for gums to bleed are side effects of cyclosporine use. The excess gum tissue may grow over the teeth if initial growth is ignored or dental hygiene is poor. Nifedipine (Procardia®), nicardipine (Cardene®) and phenytoin (Dilantin®) are other medications that may cause gingival hyperplasia.

Treatment

Careful attention to dental hygiene is the most effective form of treatment. Flossing around and below the gum line reduces the severity of gingival hyperplasia since plaque buildup may be involved in gum abnormalities. Many recipients find over-the-counter oral rinses, such as Peroxyl®, helpful. Antibiotics such as Zithromax® (azithromycin) have also been used by some patients.

Helpful Tips

• Notify your dentist that you are taking cyclosporine.
• Visit your dentist at least twice a year.
• Brush your teeth at least twice a day with a soft nylon toothbrush and floss at least once a day.
• Massage your gums with your finger, or try using a water pick or an electric toothbrush.
• Avoid smoking and mouth breathing, which are risk factors for gingival hyperplasia.

Acne

Causes

Acne is most frequently associated with cyclosporine, prednisone and sirolimus. Cyclosporine and sirolimus increase the oiliness of the skin, which contributes to acne.

Treatment

Acne may be treated or prevented with acne preparations. Benzoyl peroxide is the active ingredient found in many effective nonprescription preparations. Acne treatments may also be prescribed by a dermatologist. Commonly prescribed regimens include topical antibiotics, creams, such as tretinoin (Retin-A®) or azelaic acid (Azelex®), or isotretinoin capsules (Accutane®).

Helpful Tips

• Keep your skin clean.
• Wash areas of oily skin several times a day ‹ wash gently and do not rub the skin.
• Use a soap which removes oil, but does not dry the skin (i.e., Basis®).
• Avoid moisturizing soaps (i.e., Dove®, Tone®, Caress®) or harsh antibacterial soaps (i.e., Dial®).
• Do not pick pimples since this can result in infection and scarring.

There are many steps that recipients can take to become more involved in the ultimate success of their transplant. Knowing the early signs and symptoms of side effects and understanding how to prevent and/or control others is one step. Recipients are encouraged to talk with their healthcare team in order to prevent and/or reduce the severity of immunosuppressant-related side effects.
 

Information in this Web site is intended to supplement, not replace, the medical advice you receive from your healthcare providers. If you have a question regarding any information contained in this Web site and how it pertains to your personal condition, please consult your physician.

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