M Toronto Myositis Centreat St. Michael's Hospital
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Nintedanib

Ofev · say “nin-TED-a-nib”
Antifibrotic
i
An antifibrotic, not an immune medication.

Nintedanib slows lung scarring and is added alongside your immune treatment, not instead of it. Loose stools are common and manageable.

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What it is

For lung scarring that keeps progressing.

Nintedanib is an antifibrotic medication. Unlike the others here, it does not suppress the immune system. It slows the scarring of lung tissue and is approved for progressive fibrosing interstitial lung disease and for systemic-sclerosis lung disease. When myositis-related lung disease keeps scarring despite immune treatment, it may be added to slow the decline in lung function. It works alongside your immune medications.

How to take it
  • Comes as a 150 mg capsule, taken twice daily about 12 hours apart, with food.
  • Swallow the capsule whole with liquid; do not chew or crush it.
  • If you miss a dose, take the next one at the usual time; do not double up.
  • Store in its original packaging.
What to expect
  • It does not reverse existing scarring; it slows further decline in lung function.
  • Loose stools often start early. Staying hydrated and using anti-diarrhoea medicine helps, and the dose can be adjusted.
  • You continue your immune medications alongside it.
Benefits

How it helps you.

Slows lung-function decline

Shown to slow the loss of lung capacity in progressive fibrosing lung disease.

Works alongside immune treatment

Adds an antifibrotic effect to your existing medications, not a replacement.

Oral medication

Taken as a capsule at home.

Established in lung fibrosis

Approved and widely used across several fibrosing lung diseases.

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
Diarrhea
The most common effect. Hydration, diet, and anti-diarrhoea medicine help, and the dose can be lowered.
Nausea and reduced appetite
Common, and often eased by taking it with food.
Weight loss
Some people lose weight; this is monitored.
Vomiting
Can occur, usually manageable.
Serious but uncommon
Liver enzyme changes
It can raise liver enzymes, so liver blood tests are done before and during treatment.
Bleeding risk
A small increased bleeding tendency. Report unusual bleeding, and tell your team if you take blood thinners.
Cardiovascular events
Rarely, heart-related events. Report chest pain or new breathlessness.
Bowel injury
Very rarely, a tear in the bowel. Report severe stomach pain.
Staying safe

Monitoring and precautions.

Regular monitoring
  • Liver function tests before starting and periodically.
  • Weight and appetite are followed.
  • Lung function tests track whether the decline is slowing.
  • Tell your team about blood thinners, given the small bleeding risk.
Daily precautions
  • Take it with food to reduce stomach upset.
  • Keep anti-diarrhoea medicine on hand and stay hydrated, as advised.
  • Report blood thinners or new medications, since some interact.
  • It does not weaken the immune system, but keep up your usual vaccines.
When to call your doctor

Contact the clinic if you notice:

Severe or persistent diarrhea
That is not controlled, or leaves you dehydrated. Report it, as the dose may need adjusting.
Yellowing skin or dark urine
May signal the liver. Report promptly.
Severe stomach pain
Rarely a sign of a bowel problem. Seek care.
Unusual bleeding
Report bleeding that is unusual for you.
Chest pain or new breathlessness
Report promptly.
Marked weight loss
Let your team know so nutrition can be supported.

Pregnancy & breastfeeding

Nintedanib can harm an unborn baby and must not be used in pregnancy. Use effective contraception during treatment and for a period after stopping, as advised. Tell your doctor if you are pregnant or planning.

!

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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