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Abdul Mannan: Factor IX Prophylaxis – Can Breakthrough Bleeding Still Occur?

Abdul Mannan/LinkedIn

Nov 12, 2026, 13:00

Abdul Mannan: Factor IX Prophylaxis – Can Breakthrough Bleeding Still Occur?

Abdul Mannan, Consultant Haematologist, Director Haemophilia Centre, Haematology Lab Lead at Betsi Cadwaladr University Health Board, shared a post LinkedIn:

“Can a person with haemophilia B still bleed while receiving regular factor IX treatment?

Yes. And that is a conversation worth having before a bleed occurs.

Factor IX helps blood clot. In haemophilia B, there is too little working factor IX. Regular replacement treatment helps protect against bleeding, but it cannot promise that every bleed will be prevented.

A systematic review by Lindsley and colleagues brought together 24 clinical trials and 53 observational studies involving people with haemophilia B without inhibitors who received preventive factor IX.

Here is what I would share with patients:

Regular treatment helps reduce bleeding, but bleeds can still happen.
Some people in the studies reported no bleeds; others experienced bleeding.
A study average cannot tell us exactly what will happen to you.
If you suspect a bleed, follow your care plan and contact your haemophilia team.

For clinicians, the pooled treated bleeding rate was 2.23 per year across 13 trials. Definitions and follow-up varied, so that figure needs context.

The goal is a care plan built around the person, their treatment and their experience.

How do you discuss breakthrough bleeding and treatment goals with your patients?”