Tacrolimus (brand name: Prograf) is a medicine that lowers the body’s natural immunity. The immune system response is thought to be involved in nephrotic syndrome. It is widely used to prevent rejection of transplanted organs, such as the kidney, heart, and liver.

Why is Tacrolimus Needed for Rare Kidney Disease Patients?

If you are experiencing too many relapses of nephrotic syndrome, your doctor may prescribe tacrolimus. Tacrolimus has shown to increase chances of remission in both steroid-dependent and steroid-resistant forms of nephrotic syndrome, although it may take several weeks for it to make a difference in your condition.

How Should I Take Tacrolimus?

Tacrolimus comes in both capsule and liquid form. Take tacrolimus for as long as your doctor tells you, even if you seem to feel better and confirm with your doctor before stopping or changing its dose.

Take Tacrolimus at the same times every day. Doses should be at least 12 hours apart. To keep blood levels of Tacrolimus the same, you should always take it the same way, either with food or without food.

If the liquid form is taken you should measure the correct amount using an oral syringe or medicine spoon (you can get these from your local pharmacy). Do not use a kitchen teaspoon because you will not be able to measure the correct amount.

The tablet form should NOT be cut, crushed, or chewed.

*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.

Frequently Asked Questions

Your may have some of these side effects while on tacrolimus. Check with your doctor if you continue to have any of these side effects and they do not go away:

  • Trouble sleeping
  • Watery bowel movements (diarrhea)
  • Nausea (upset stomach) and vomiting (throwing up)
  • Abdominal pain
  • Loss of energy or weakness
  • Increased thirst or more frequent urination
  • Muscle tremors or twitching
  • Changes in mood, irritability, or confusion
  • Numbness and tingling
  • Skin rash and itching
  • Headache

Tacrolimus 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.

Tacrolimus 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.

Tacrolimus 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 tacrolimus in your body. Check with your doctor before taking any other medicines (prescription, non-prescription, herbal, or natural products).

You should NOT eat grapefruits or drink grapefruit juice while taking tacrolimus. This may increase the tacrolimus level in your blood and make you more susceptible to certain side effects.

Avoid taking antacids with tacrolimus because they will decrease its absorption.Take extra care if you are diabetic, because tacrolimus may increase your blood sugar.

Tacrolimus may decrease kidney function, usually if blood levels of tacrolimus are too high. This is why blood work is checked frequently to adjust the dosage of tacrolimus.

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, and sore throat
  • Unusual bleeding or bruising
  • Unusual tiredness or weakness
  • Shortness or breath or trouble breathing
  • Chest pain
  • Fast, slow, or uneven heartbeat
  • Black, tarry stools
  • Seizures

Find a Specialist

It is important to work with a nephrologist who specializes in rare kidney disease (RKD) and can provide personalized advice based on your individual health needs and changes in available treatments. NephCure has a curated list of NephCure Specialists nationwide ready to help you.

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