IPIG 2025 | Is it possible to discontinue anticoagulation in patients with PNH?

It’s not the easiest subject because there’s no clinical trials on whether you can stop anticoagulation and it’s different in different countries. So the majority of countries around the world don’t have access to anti-complement therapy and so for those patients if you’ve got someone who’s got a big clone, they don’t have a very high bleeding risk, so if the platelet count isn’t too low, then anticoagulation is definitely something to do. For patients who are on anticoagulant therapy, we know from data on eculizumab and ravulizumab that the best prevention for thrombosis is being on those therapies. There’s also now data on pegcetacoplan as well. The other anticoagulant therapies, we don’t have data yet, but hopefully that will come through. In those patients, I would anticoagulate them for the first three months. In patients who’ve never had a thrombosis, I would discontinue anticoagulation at three months. But where it’s really tricky is when you’ve got patients who’ve had a prior thrombosis, or multiple thromboses, or a life-threatening thrombosis. In those patients, what we’re tending to do, and I think most clinicians are, is continue their anticoagulation in the long term. We’ve always been frightened of thrombotic events, it’s the main cause of death in the disease, but there are quite a lot of instances where we’ve had to stop, or patients have elected to stop anticoagulation in that setting, and they’re not getting thrombosis. So there’s no clinical trial data, and I think it has to be done on an individual basis, but we’ve not seen any problems when we do discontinue anticoagulation in that setting.

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