What are long-term treatments for hereditary angioedema?
Patient's Query
Hello doctor,
I am 31. I have been having sudden swelling of the lips, eyelids, and sometimes my throat. Once, I even had to rush to the emergency room because breathing was difficult. Doctors think it is hereditary angioedema; my father had similar attacks. Antihistamines do not help much.
I read about special injections or tablets to prevent these attacks. How can I keep emergency medicine with me always? Is there any permanent cure, or do I have to manage attacks lifelong?
Please help.
Thank you.
Hello,
Welcome to icliniq.com.
I read your query and understood your concern.
Your symptoms and family history are very suggestive of hereditary angioedema (HAE), which, unlike allergic angioedema, usually does not respond well to antihistamines or steroids. In HAE, the key problem is deficiency or dysfunction of the C1 inhibitor protein, and treatment focuses on both acute management of attacks and long-term prevention.
For emergencies, you can be prescribed on-demand medications such as C1 esterase inhibitor (intravenous or subcutaneous), Icatibant (a bradykinin receptor blocker, given as an injection you can carry and self-administer), or Ecallantide, which can stop swelling quickly if your throat or airway is involved.
For prevention, options include regular prophylactic C1 inhibitor injections, Lanadelumab (a monoclonal antibody given every few weeks), or oral Berotralstat taken daily. At present, there is no permanent cure, so the condition is managed lifelong, but with modern treatments, many patients are able to live normally and avoid life-threatening attacks.
You should ask your doctor about creating an emergency action plan and keeping rescue medication with you at all times, especially since throat swelling can progress rapidly.
I hope that this answers your query.
Kindly follow up if you have more doubts.
Thank you.
Same symptoms don't mean you have the same problem. Consult a doctor now!
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