Sirolimus (Rapamycin, Rapamune) Sirolimus, also known as rapamycin or by the brand name Rapamune, is a medicine that lowers the body’s natural immunity. The immune system response is thought to be involved in Nephrotic Syndrome. It is also used to prevent rejection of transplanted organs, such as the kidney, heart, and liver. Why is sirolimus needed for Nephrotic Syndrome patients? Your doctor may recommend sirolimus if Nephrotic Syndrome doesn’t get better with steroid treatment or if it keeps coming back. There is scientific evidence that shows sirolimus is a valid treatment option in patients with steroid-resistant Nephrotic Syndrome although it may take several weeks for sirolimus to make a difference in your condition. How should I take sirolimus? How is sirolimus administered? Sirolimus comes in tablet and liquid forms. If taking the liquid form, you should measure the correct amount using an oral syringe or medicine spoon. (You can get these from your pharmacist.) Do not use a kitchen teaspoon because you will not be able to measure out the correct amount. The tablet form should NOT be cut, crushed, or chewed. You should consult your doctor before you stop taking this medicine for any reason. You may take sirolimus with food. Try to keep the type and amount of food the same. Changes in your diet may change how sirolimus is absorbed. What are the possible side effects of sirolimus? Your may have some of these side effects while on sirolimus. Check with your doctor if you continue to have any of these side effects and they do not go away: Upset stomach Vomiting (throwing up) Diarrhea (loose, watery stools) Sores in the mouth or throat Headache Fatigue Shaking (Tremors) Prolonged time for wound to heal Acne Call your doctor during office hours if you have any of these side effects: Unusual tiredness or weakness Yellowing of the skin or eyes Frequent urge to urinate Decrease in the amount of urine produced Most of the following side effects are not common, but they may be a sign of a serious problem. Call your doctor right away or go to the emergency room if any of these side effects develop: Fever, chills Cough or sore throat Blood in urine, difficulty urinating, or pain with urination Severe headache Seizures Confusion Shortness of breath or trouble breathing Chest pain Fast or irregular heartbeat Swelling of hands, feet, ankles, or lower legs Severe stomach pain Skin rash Unusual bruising or bleeding What are precautionary measures I should take while taking sirolimus? Sirolimus weakens your immune system, which increases chances of getting an infection. Watch closely for signs of infection such as a fever, chills, cough, and sore throat. Contact your doctor right away if you notice any signs of infection. You should not receive any immunizations (vaccines) without your doctor’s approval. Sirolimus may make your skin more likely to sunburn. Make sure to cover your skin while outside. You should also use sunscreen with an SPF of 30 or higher to prevent sunburn. Avoid grapefruit and grapefruit juice while taking sirolimus. They may increase the sirolimus level in your blood and make you more susceptible to certain side effects. Sirolimus may cause birth defects if it is taken at the time of conception or during pregnancy. Many other medications may change the blood levels of sirolimus in your body. Check with your doctor before taking any other medicines (prescription, non-prescription, herbal, or natural products). *Note: The decision to prescribe a medication is the responsibility of your physician/primary care provider based on his/her evaluation of your condition. The above is meant for informational purposes only. Discuss this information and all information about drugs/medications with your physician before starting or stopping any medication.