HAE Treatments

Do newly-approved therapies offer additional treatment options?

New FDA-approved HAE treatments provide patients and their physicians with choices and an opportunity to develop an HAE treatment plan tailored to meet each patient’s unique needs.

Cinryze ™ brand of C1-inhibitor has been FDA-approved for preventing HAE attacks. Cinryze ™is delivered intravenously and is approved for home infusion.
Berinert^® brand of C1-inhibitor has been FDA-approved for treating acute abdominal, facial or laryngeal HAE attacks. Berinert^® is delivered intravenously and is approved for on-demand treatment through self-administration.
Kalbitor^® brand of plasma kallikrein inhibitor has been FDA-approved to treat acute HAE attacks in patients 16 years of age and older. Kalbitor^® is delivered through subcutaneous injections.
Firazyr® brand of bradykinin receptor antagonist has been FDA-approved for treating acute HAE attacks in patients 18 years and older. Firazyr® is delivered by subcutaneous injection and is approved for self-administration

The medical literature and practitioner experience confirm that corticosteroids (prednisone), antihistamines and epinephrine are not effective in treating angioedema caused by C1-inhibitor deficiency.

Prior to the availability of the four FDA-approved HAE therapies, anabolic steroids (also known as androgens) such as danazol, oxandrolone and stanozolol were commonly prescribed for treating HAE patients. While anabolic steroids have been shown to be useful, they are not well-tolerated by many women, directly linked to liver toxicity and cause an increase in cholesterol levels. In addition, these drugs should not be used to treat children.

The US HAEA believes that available therapies provide an opportunity for HAE patient to lead a healthy life. Patient Services Representatives are available to provide information to help patients and their physicians choose a therapeutic approach that best fits individual treatment needs.

Contact a US HAEA Patient Services Team Member to receive more information on how you can access these new HAE medications.

What treatments are available for children who have Hereditary Angioedema?

One of the available HAE therapies may be an appropriate choice for use with children. Parents should discuss obtaining access to the available therapies with their child’s treating physician.

Are there any new treatments on the horizon?

One new HAE therapy, called Rhucin, is still being investigated. Rhucin, from Pharming NV, is a recombinant human C1 Inhibitor protein that is derived from the milk of genetically altered rabbits. The company is still in the process of applying for a US license for their product.

Clinical trials of investigational HAE therapies are still being conducted.
More information can be found on our Clinical Trials page or contact a Patient Services Team Member for more information.

What if I am pregnant?

Studies report that pregnant women with HAE describe that pregnancy worsened symptoms or symptoms improved in equal percentages.

During pregnancy, treatment with anabolic steroids (also known as androgens) such as danazol, oxandrolone and stanozolol is contraindicated. You may wish to discuss new FDA-approved HAE medications with your physician to develop a treatment plan specific to your individual needs before, during and after giving birth.

Your physician will also be able to provide information on the new FDA-approved medications for HAE in regard to breastfeeding.

What medicine should HAE patients avoid?

ACE Inhibitors and estrogen-derived medications (birth control pills and hormone replacement drugs) have been known to increase the frequency and intensity of HAE attacks. ACE Inhibitors are often prescribed to treat high blood pressure. Below is a list of some of the ACE Inhibitors licensed in the US:

captopril (Capoten)
benazepril (Lotensin)
enalapril (Vasotec)
lisinopril (Prinivil, Zestril)
fosinopril (Monopril)
ramipril (Altace)
perindopril (Aceon)
quinapril (Accupril)
moexipril (Univasc)
and trandolapril (Mavik)

Purchasing Stanolzolol (Winstrol)

New FDA-approved HAE treatments provide patients and their physicians with choices and an opportunity to develop a non-steroidal HAE treatment plan tailored to meet each patient’s unique needs.

For patients who prefer to continue steroidal therapy, high quality Stanolzolol (generic Winstrol) can be purchased from the many “compounding pharmacies” located throughout the United States. To find one closest to you, please click on the link below:

International Academy Of Compounding Pharmacists

Kohlls Pharmacy in Omaha, Nebraska can compound Stanozolol (generic Winstrol).

Check out their web page at Kohlls Pharmacy.

Please contact your Patient Services Team Member for more information on obtaining Stanolzolol (Winstrol) from Kohlls or a compounding pharmacy near you.

For Patients