M Toronto Myositis Centreat St. Michael's Hospital
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Tacrolimus

Prograf, Advagraf · say “ta-KROH-li-mus”
Calcineurin inhibitor
iUsed in myositis based on specialist experience and evidence, not a formal Canadian myositis approval.
i
Blood levels are measured.

Tacrolimus is dosed to a target blood level, so take it at consistent times and keep your blood tests. Grapefruit and many other medications change its level.

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What it is

A steroid-sparing option, often for the lungs.

Tacrolimus is a calcineurin inhibitor. It calms the T cells that drive the immune attack in myositis. At the Centre it is used as a steroid-sparing medication, and it is a common choice when myositis involves the lungs (interstitial lung disease), often alongside mycophenolate. It is used in myositis based on specialist experience and evidence rather than a formal Canadian myositis indication.

How to take it
  • Comes as capsules. The dose is individual and is adjusted to your blood level, so it can change over time.
  • Immediate-release tacrolimus is taken twice daily, about 12 hours apart. Some formulations are once daily; follow your exact prescription.
  • Be consistent about taking it with or without food, since food changes how much is absorbed.
  • Avoid grapefruit and grapefruit juice, which raise tacrolimus to unsafe levels.
  • If you miss a dose, take it when you remember unless the next dose is near; never double up.
What to expect
  • It works over weeks. Your doctor adjusts the dose based on your blood levels and response.
  • CK and lung tests are followed to judge whether it is helping.
  • It is often combined with other medications rather than used alone.
Benefits

How it helps you.

Controls disease activity

Suppresses the immune attack on muscle and, importantly, on the lungs.

Helpful for lung involvement

A frequent choice for myositis-related interstitial lung disease, often with mycophenolate.

Steroid-sparing

Lets your doctor lower your prednisone over time.

Oral medication

Taken as a capsule at home, with dosing guided by blood tests.

Flexible dosing

The dose is tuned precisely to you using blood levels.

An option when others fall short

Useful when first-line steroid-sparing medicines have not been enough.

Risks & side effects

What you should know.

Your doctor prescribed this because the expected benefits outweigh the risks for your situation. Here is the honest, full picture.

Common side effects
Tremor
Fine hand shakiness, especially early or at higher levels. Often improves as the dose is adjusted.
Headache
Common early in treatment.
Higher blood pressure
Tacrolimus can raise blood pressure, which is monitored and treated if needed.
Higher blood sugar
It can raise glucose, monitored by blood tests.
Tingling or stomach upset
Numbness or tingling, or mild nausea, can occur.
Serious but uncommon
Kidney effects
Tacrolimus can affect kidney function, which is why the dose is guided by blood levels and kidney tests.
High potassium
Blood potassium can rise, monitored by blood tests.
Higher infection risk
As an immunosuppressant, it raises infection risk. Report fevers.
Rare neurological effects
Very rarely, confusion, seizures, or vision changes (a condition called PRES). Report these urgently.
Staying safe

Monitoring and precautions.

Regular monitoring
  • Tacrolimus blood levels (trough levels) guide the dose, especially early and after any change.
  • Kidney function and electrolytes (creatinine, potassium, magnesium) are checked regularly.
  • Blood pressure and blood sugar are monitored.
  • CK and lung function are followed to judge the response.
Daily precautions
  • Avoid grapefruit and grapefruit juice entirely.
  • Tell every provider you take tacrolimus, since many medications (including some antibiotics and antifungals) change its level.
  • Be cautious with NSAIDs (ibuprofen, naproxen), which can add to kidney strain. Check first.
  • Use sun protection and attend skin checks, since long-term immunosuppression raises skin-cancer risk.
  • Avoid live vaccines; flu and COVID vaccines are safe.
When to call your doctor

Contact the clinic if you notice:

Fever or signs of infection
Any fever, chills, cough, or painful urination. Report promptly.
Significant tremor or confusion
Marked shakiness, confusion, seizures, or vision changes may mean the level is too high. Report urgently.
Reduced urine or swelling
A drop in urination or new swelling may reflect the kidneys.
Severe headache
A severe or persistent headache should be reported.
New or worsening weakness
May signal a myositis flare needing a treatment change.
Before any new medication
Many drugs interact with tacrolimus. Check first, including over-the-counter products.

Pregnancy & breastfeeding

Tacrolimus is one of the immune-suppressing medicines that can be continued in pregnancy when needed, under specialist supervision, and it is generally considered compatible with breastfeeding. Always tell your doctor if you are pregnant or planning, since your dose and levels are watched more closely.

!

This guide is for education, not medical advice. Myositis treatment is individual, and many of these medications are used based on specialist experience and evidence rather than a formal Canadian myositis indication. Never start, stop, or change a medication without your own doctor. Your doses and choices are decided with your care team at the Centre.

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