11 Hereditary Angioedema Treatments: Berinert, Orladeyo, and More
Hereditary angioedema is a rare genetic disorder. Hereditary angioedema treatment may involve C1-INH replacement therapy and medications for related symptoms.
Ruconest
Used for Edema
Used for Edema
Ruconest is a medication that's injected intravenously (into the vein) to treat sudden swelling and painful attacks in people 13 years of age or older with hereditary angioedema (HAE). Ruconest is made from rabbit milk, so it can't be given to people who are allergic to rabbits or products made with rabbit ingredients.
What is Ruconest?
What is Ruconest used for?
- Treatment of sudden hereditary angioedema (HAE) attacks in people 13 years and older
How Ruconest works
Ruconest is a C1 esterase inhibitor replacement made from the milk of genetically modified rabbits. It contains a similar form of the C1 esterase inhibitor protein found in your blood that helps relieve swelling (inflammation). Hereditary angioedema (HAE) is a swelling condition caused by poorly functioning or low levels of C1 esterase inhibitor. By raising the levels of C1 esterase inhibitor in the blood, Ruconest helps to treat sudden swelling attacks.
Drug facts
| Common Brands | Ruconest |
|---|---|
| Drug Class | C1 esterase inhibitor replacement |
| Controlled Substance Classification | Not a controlled medication |
| Generic Status | No lower-cost generic available |
| Availability | Prescription only |
Side effects of Ruconest
The following side effects may get better over time as your body gets used to the medication. Let your healthcare provider know immediately if you continue to experience these symptoms or if they worsen over time.
Common Side Effects
In clinical studies, the following side effects occurred in at least 2% of people using Ruconest:
- Headache
- Nausea
- Diarrhea
Less Common Side Effects
- Skin redness
- Skin burning sensation
- Back pain
- Sneezing
- Dizziness
- Fatty lump under skin
Ruconest serious side effects
Contact your healthcare provider immediately if you experience any of the following.
- Allergic reaction: hives, chest tightness, wheezing, lightheadedness, faintness, fast heartbeat, difficulty breathing, swelling of the tongue or throat
- Blood clot: pain, swelling, warmth, or discoloration of the arm or leg, unexplained shortness of breath, chest pain or discomfort, unexplained fast heartbeat, numbness or weakness on one side of the body
The following Ruconest side effects have also been reported
Side effects that you should report to your care team as soon as possible:
- Allergic reactions—skin rash, itching, hives, swelling of the face, lips, tongue, or throat
- Blood clot—pain, swelling, or warmth in the leg, shortness of breath, chest pain
Side effects that usually do not require medical attention (report these to your care team if they continue or are bothersome):
Pros and cons of Ruconest
Pros
- Vial and diluent (mixing liquid) don't have to be refrigerated
- Can keep the solution refrigerated after mixing for up to 8 hours
- Most people only need one dose to treat an HAE attack.
- Can be given at home or the provider's office
Cons
- Have to reconstitute (mix) before it can be given
- Given as an injection into the vein
- Can't be given if allergic to rabbits
- Only available as a brand-name medication, so it might be expensive
Pharmacist tips for Ruconest
- Ruconest has to be reconstituted (or mixed) with sterile water before you can use it. Sterile water for injection isn't included in the Ruconest package, so make sure you ask your provider or pharmacist for complete supplies.
- Don't use Ruconest until you or your caregiver has been trained by a healthcare provider. Review the instructions on how to prepare and give Ruconest properly. Ask your provider if you're not sure how to use this medication.
- Make sure that you or your caregiver knows how to use epinephrine (Epipen) in case of an allergic reaction from Ruconest.
- Store Ruconest at room temperature. Make sure both Ruconest vial and water diluent vial are at room temperature before you prepare the injection.
- Do your best to keep everything clean and free of germs when reconstituting (or mixing) Ruconest. Always wash your hands before preparing. Always finish preparing the medication as soon as possible after opening the vials. This will help lower the risk of contamination (spreading germs) and infections.
- After mixing the water into the Ruconest powder, make sure you use it right away, or within 8 hours if the mixture is kept refrigerated. Don't freeze your mixed solution.
- Each vial is for a one-time use only. If you have any partially used vials after your treatment, throw them away.
- Although Ruconest comes from rabbits, the rabbits are monitored very closely and the milk is screened before the medication is made. During the manufacturing process of Ruconest, any viruses present are removed or inactivated. These multiple steps are taken to lower the risk of infections.
- Stop using Ruconest and let your provider know right away if you experience an allergic reaction or signs of a blood clot (e.g., swelling in the arms or legs, an area of warm skin, painful veins).
- Let your provider know if you're pregnant, planning to become pregnant, or breastfeeding while taking Ruconest to discuss if this medication is safe for you and your baby.
Risks and warnings for Ruconest
Ruconest can cause some serious health issues. This risk may be even higher for certain groups. If this worries you, talk to your doctor or pharmacist about other options.
Severe allergic reaction
Ruconest can cause severe allergic reactions in some people, so make sure your provider also prescribes epinephrine (Epipen) for you to have during your injection of this medication. Get emergency medical help if you experience hives, chest tightness, wheezing, lightheadedness, faintness, fast heartbeat, difficulty breathing, or swelling of the tongue or throat.
Blood clots
- Risk factors: Current catheter or access device | History of stroke or blood clots | History of blood vessel or heart problems | Taking birth control pills or certain androgens | Morbid obesity | Not mobile
Blood clots have occurred in people who take Ruconest, even at the recommended dose. Let your provider know if you have any of the risk factors mentioned above, and they will determine if Ruconest is right for you. Get emergency medical help if you experience any signs of blood clots, such as pain, swelling, warmth, or discoloration of the arm or leg, unexplained shortness of breath, chest pain or discomfort, unexplained fast heartbeat, or numbness or weakness on one side of the body.
Ruconest dosage
Typical dosage for Ruconest
Because the dose is based on body weight, your or your child's provider will help you calculate the right dose.
The typical dose is 50 units/kg of body weight, with a maximum of 4,200 units per dose, given as an injection into the vein slowly over 5 minutes.
For people with a body weight of 84 kg (184 lbs) or more, use the maximum dose of 4,200 units.
A second dose can be given if the attack symptoms don't go away. Don't take more than two doses in a 24-hour period.
Ruconest contraindications
Contraindications are specific health conditions or situations in which a person should not take a medication due to safety concerns. If you have any of the following conditions or if any of the following apply to you, let your healthcare provider know because Ruconest will not be safe for you to take.
- History of allergy to rabbits or products made from rabbit ingredients
- History of life-threatening allergic reaction to any C1 esterase inhibitor
What are alternatives to Ruconest?
There are a number of medications that your doctor can prescribe in place of Ruconest. Compare a few possible alternatives below.
News about Ruconest
