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What are the best treatments for Hereditary Angioedema?

See the best treatments for Hereditary Angioedema here

Hereditary Angioedema treatments

Hereditary Angioedema (HAE) is a rare genetic disorder characterized by recurrent episodes of swelling in various parts of the body, including the skin, gastrointestinal tract, and airways. These episodes can be unpredictable, painful, and potentially life-threatening. While there is no cure for HAE, there are several treatment options available to manage and prevent symptoms.



Treatment Options for Hereditary Angioedema



1. Medications:


Medications play a crucial role in managing HAE symptoms. The following are some commonly used drugs:



  • C1 esterase inhibitor (C1-INH) replacement therapy: This therapy involves infusing C1-INH protein into the body to replenish the deficient or dysfunctional protein responsible for HAE. It helps reduce the frequency and severity of attacks.

  • Bradykinin B2 receptor antagonist: These medications block the effects of bradykinin, a chemical that triggers swelling in HAE. They are available in oral or injectable forms and can be used for both acute attacks and long-term prevention.

  • Kallikrein inhibitor: Kallikrein is an enzyme involved in the production of bradykinin. Inhibiting kallikrein can help prevent swelling. This class of medications is relatively new and has shown promising results in reducing attack frequency.

  • Androgens: Synthetic forms of male hormones, such as danazol and stanozolol, can be used to increase the levels of C1-INH and reduce the frequency of attacks. However, they may have side effects and are typically used when other treatments are ineffective or not well-tolerated.



2. Rescue Medications:


In addition to long-term preventive medications, individuals with HAE may require rescue medications to manage acute attacks. These medications help alleviate symptoms and reduce the duration of an attack. Some commonly used rescue medications include:



  • Antihistamines: These drugs can help relieve itching and reduce mild swelling during an attack.

  • Corticosteroids: Steroids like prednisone can be used to reduce inflammation and swelling during an attack. However, they are not recommended for long-term use due to potential side effects.

  • Ecallantide and icatibant: These medications work by blocking the effects of bradykinin and can be self-administered as injections during an attack. They provide rapid relief and are particularly useful for attacks involving the skin or abdominal symptoms.



3. Prophylactic Measures:


Preventive measures can help reduce the frequency and severity of HAE attacks. These include:



  • Avoiding triggers: Identifying and avoiding triggers that may provoke an attack, such as certain medications, stress, trauma, or hormonal changes, can be helpful.

  • Regular follow-up: Regular check-ups with a healthcare provider specializing in HAE can ensure appropriate management and adjustment of treatment plans.

  • Emergency action plan: Creating an emergency action plan in collaboration with a healthcare professional can help individuals and their caregivers respond effectively during an acute attack.



4. Psychological Support:


Living with a chronic condition like HAE can be challenging both physically and emotionally. Seeking psychological support, such as counseling or joining support groups, can provide individuals and their families with valuable coping strategies and a sense of community.



It is important for individuals with HAE to work closely with their healthcare providers to determine the most suitable treatment plan based on their specific needs and medical history. Treatment approaches may vary, and regular monitoring is essential to ensure optimal management of HAE symptoms.


Diseasemaps
10 answers
Non-allergic Hereditary Angioedema (HAE) responds only or best to HAE - specific prophylactic and rescue meds that have few if any side-effects:
Prophylactic:
Cinryze

Rescue:
Berinert
Firazyr
Kalbitor
Ruconest

The steroid preventative Danazol is very effective for many who need liver function tests at least yearly as this medication has a major side effect of damaging the liver.

Fresh Frozed Plasma (FFP) is used by many as a preventative or a rescue medication. It can be effective, but it can also make an attack worse for some.

Posted Feb 22, 2017 by Teresa Scruton 300
Firazyr

Posted Feb 27, 2017 by Zoie 300
Cinryze. Firazyr. Transexamic Acid

Posted Mar 15, 2017 by Jennifer 1150
Cynrize, Berner the, Kalbitor, Firyzer

Posted Apr 27, 2017 by Mary Helen 1400
Cinryze, berinert, firazyr

Posted Apr 28, 2017 by Nikki 1150
Cinryse or firszyr are good treatments

Posted May 23, 2017 by Donna 2250
I have tried just about every treatment made available, and I would have to say that the plan I am on now has been the most effective for me. I home infuse with Haegarda tree times a week, but have firazyr on hand in case I get any breakthrough attacks. If Both medicines are not stopping the attack, my Plan C is going to the emergency room at Hartford Hospital, where they administer the Cinryze. I have found this to be the most effective out of all the medications I’ve Tried in the past, but that being said.. this treatment plan does not always work. It is not enough to end the attack.

Posted Jul 10, 2018 by Alex 400
Cinryze as a preventative and Firazyr as a rescue drug

Posted May 14, 2019 by [email protected] 2300
Translated from spanish Improve translation
Firazyr (icativant) application subcutaneous and Berinert of application iv.

Posted Feb 23, 2017 by Mary 1161

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Stories of Hereditary Angioedema

HEREDITARY ANGIOEDEMA STORIES
Hereditary Angioedema stories
Mine started in 2009 with my first swell, it was my lips and cheek. That is the same time the ucartia started also. It took my Dr. 5 years to find something to help me control and survive my Angioedema. I never knew how bad this could be till I was d...
Hereditary Angioedema stories
My earliest memory of HAE symptoms was when I was about 6 or 7.  I would occasionally get the abdomen swelling, be sick and sweating all day, then I would finally vomit and then feel better, go to sleep and be better the next morning.  I consider m...
Hereditary Angioedema stories
Desde niño tuve que soportar los diversos episodios de AEH sin saberlo, pasando de medico en medico con diversidad de diagnosticos y ordenes de cirugias innecesarias, gracias a Dios no acudi a ninguna. Fue hace tres años que optuve el diagnostico r...
Hereditary Angioedema stories
I was diagnosed accidentally, after seeing a TV show where the host talked about her HAE in 2014. My first attack was at 8, when I was mistakenly hospitalized with appendicitis.  The surgery wasn't done, because I felt better in 3 days.  Next reme...
Hereditary Angioedema stories
i was dx in 2008 with my first fasel swell . im hae type 2 . im co founder of the facebook group ( https://www.facebook.com/groups/156649074393978/ )

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Hereditary Angioedema forum

HEREDITARY ANGIOEDEMA FORUM
Hereditary Angioedema forum
Hi All, Is anyone aware of Cinryze experiencing a shortage supply? If so, why and where is this shortage (US or Europe)?   Thanks!
Hereditary Angioedema forum
Hi All, Is anyone aware of Cinryze experiencing a shortage supply? If so, why and where is this shortage (US or Europe)?   Thanks!
Hereditary Angioedema forum
Hi All, For those of you currently (or in the past) taking Cinryze, Firazyr, or Kalbitor, has Shire always paid for your co-pays through the co-pay assistance program or was there a limit to how much they paid? I've also heard that the case managers...
Hereditary Angioedema forum
Hi Everyone, I am interested in understanding and learning about your perspective on treatments and services available for HAE. What happens when you lose insurance and you need to obtain treatment? During this time, are you given treatment fre...
Hereditary Angioedema forum
Hi Everyone, I'm trying to understand what it is like for people with HAE. Therefore, would you ever switch treatment? Why or why not? What happens if you lose insurance coverage? Are you still recieving treatment? Was there a time where you had to ...

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