Rapamune (Sirolimus)

Do’s

• Take Rapamune exactly as prescribed by your healthcare provider, typically once daily.
• If you experience nausea or an upset stomach, take it with food. However, choose either with or without food and stick to that routine for every dose.
• Use the provided amber oral dose syringe to measure your medication accurately. Don't use household spoons.
• Mix the measured dose with at least 2 ounces of water or orange juice in a designated plastic or glass container. Stir well and drink the entire mixture immediately. Repeat with another 4 ounces of liquid to ensure you consume the entire dose. Don't prepare the mixture in advance.
• Take Rapamune regularly at the same time each day to maximize its effectiveness.
• Discuss any changes in your medical condition with your healthcare provider, especially if LAM symptoms worsen.

Don'ts

• Don't Change your dosage without consulting your healthcare provider. Taking more Rapamune won't improve your condition faster and might increase side effects.
• Don't stop taking Rapamune abruptly. Always consult your healthcare provider first.
• Don't use a household spoon for measuring.
• Don't reuse the oral dose syringe. Use a new one for each dose.
• Don't mix Rapamune with any liquids other than water or orange juice.
• Don't consume grapefruit or grapefruit juice unless your healthcare provider approves it, as it can affect how Rapamune works.
• Don't take Rapamune with cyclosporine within 4 hours. There should be a 4-hour gap between the two medications.

Common side effects:

• Peripheral edema (fluid retention causing swelling in ankles, feet, or hands)
• Abdominal pain
• Diarrhea
• Nausea
• Headache
• Pain in muscles or joints
• Upper respiratory infections (such as the common cold)
• Urinary tract infections (UTIs)
• Mouth sores
• Acne

Serious side effects that may require immediate medical attention include:

• Swelling of face, eyes, or mouth
• Trouble breathing or wheezing
• Throat tightness
• Chest pain or tightness
• Feeling dizzy or faint
• Rash or peeling of the skin
• Anemia (pale skin, unusual tiredness, feeling light-headed or short of breath)
• Serious brain infection symptoms: change in mental state, decreased vision, weakness on one side of the body, problems with speech or walking
• Allergic reaction
• Increased risk of serious or life-threatening bacterial, fungal, and viral infections
• Slow wound healing
• Serious problems and even death when used after lung or liver transplants
• Risk of serious problems including death when used for liver or lung transplants

This is not an exhaustive list, and other side effects may occur. If you experience any unusual or severe side effects while taking Rapamune,  contact your healthcare provider for medical advice.

Disclose any allergies to sirolimus, temsirolimus, or other medications before starting Rapamune.

Inform your healthcare provider about your medical history, particularly liver disease, high cholesterol/triglycerides, cancer, or recent/current infections.

Rapamune weakens your immune system, making you more susceptible to infections.

Avoid contact with individuals with contagious illnesses and talk to your healthcare provider if exposed.

Inform your healthcare provider about Rapamune use before receiving any immunizations/vaccinations, especially live vaccines.

Rapamune increases skin cancer risk. Limit sun exposure, avoid tanning booths, and wear sun protection.

Inform your healthcare provider about all medications you take before surgery.

Rapamune may affect male fertility. Consult your healthcare provider for details.

Do not use Rapamune if pregnant or planning to become pregnant. Discuss reliable birth control methods with your healthcare provider. Breastfeeding is not recommended while using Rapamune.

Rapamune weakens your immune system, raising the risk of infections and certain cancers like skin cancer and lymphoma.

To minimize these risks, take the medication at the lowest effective dose as prescribed by your healthcare provider and attend all medical appointments.

Report these symptoms immediately. Unusual skin changes, changes in moles, unusual growths/lumps, swollen glands, night sweats, unexplained weight loss, signs of infection.

Rapamune is not recommended to prevent liver or lung transplant rejection due to the risk of serious liver/lung problems.