Hey HAE: Connect. Ask. Share.
FIRAZYR is a medicine used to treat acute attacks of hereditary angioedema (HAE) in adults 18 years of age and older.
Share / Send / Save

Attack the Attacks

Triggers

Published on November 20, 2013 in Attack the Attacks

One of the challenges of HAE is figuring out what will trigger an attack. For me, I would say one of my triggers is stress, which I think is common among us HAE folks. It can be a huge event, like when I heard my grandpa passed away and, within half an hour, my face was swelling up. But, I can also have attacks from juggling the everyday demands of kids, school, work, dinner and the like.
 
I feel like, with this condition, I always feel a bit fatigued, no matter what. I do know that if I really get overtired that, too, can trigger an attack. Sometimes it’s just something I can’t predict or control, like when the weather changes drastically. Extreme temperature changes affect me, as well, and I know I cannot stay out in the sun for too long.  I’ve learned that dental procedures are a common trigger for HAE folks, but I have been very fortunate not to have had any attacks from dental procedures—even when my wisdom teeth were pulled! Of course, that’s just my experience, and everyone is different!
 
I’ve also noticed certain activities can trigger an attack if I do them very long. If I am going to do some painting, I know that will cause my hands and arms to swell. Twisting a screwdriver for too long, cutting up vegetables and fruit for a long period of time, mopping, and shoveling snow are all examples of things known to cause an attack for me. So I know if I am doing any of these activities, I need to take breaks or not do them as long. If I sit on anything too hard, such as a bench or chair, I can swell up in minutes. Oftentimes, walking can cause my feet to swell, and I know I can’t wear high heels.
 
I have spoken with many other people living with HAE and, although we have a lot of similarities, there are also so many differences. It seems that pretty much anything and everything can be a possible trigger for someone. The most important thing is to be aware of what activities or events seem to happen around your own attacks. Write them down and talk to your family and friends, because they might notice or remember things that you won’t. Realizing what our triggers are and learning how to manage them are important steps in dealing with our HAE.
 
- Bobbi

Comments:

Nicole
I had no idea what HAE was or that it even exsisted until I met Bobbi. I wish there was more I could do to help. I hope the more people know about it the more research they can do to find better medicine and better ways of delivering the medicine.

December 13, 2013

The Hey HAE Team
Hi Nicole, thank you for your comment, and for supporting the HAE community. Please feel free to share this post with others you think it could also benefit. We upload new posts frequently so check back for more stories from Bobbi and the other bloggers. Thanks again! -The Hey HAE Team

December 19, 2013

Anna
I was wondering if you have heard of people having attacks from eating too many carbs. Most of my attacks are in my abdomen and it seems every time I eat a lot of pasta, bread or pizza I get a lot of pain in my stomach. This pain is much less then the pain I get from stress attacks though. Is it possible this is from HAE?

January 02, 2014

The Hey HAE Team
Thanks for your question, Anna. Sorry to hear you’re experiencing pain. The best thing for you to do is to see your physician. You may find it helpful to write down your questions and concerns and take them with you. If you and your doctor confirm that you have HAE we have some resources that could be helpful. While different factors can trigger attacks for different people, you can find a list of potential attack triggers here: http://www.firazyr.com/what-ishereditary- angioedema/hae-attacks. There is also some great information available on www.haea.org. We hope this information is beneficial and wish you the best of luck. -The Hey HAE Team

January 15, 2014

Sue K
I have had HAE for all my adult life. I have never been able to identify my attack triggers. Stress doesn't seem to be it. I try keeping a food journal but that doesn't last too long. Any other suggestions?

April 01, 2014

Bobbi

Hi Sue, thank you for your comment. I am sorry to hear you are struggling to identify your triggers.  HAE attacks can be unpredictable and figuring out if there are possible triggers of an HAE attack can be complicated.  I would recommend discussing this with your healthcare team. As you prepare for discussion, you could check out attack trigger information on the HAEA website (www.haea.org), including a video program, HAE Essentials.  You can see a list of some commonly reported triggers here:  https://www.firazyr.com/what-is-hereditary-angioedema/living-with-hae.  I hope this information is helpful and wish you the best of luck!

May 08, 2014

Shuntae
Do you suppose to go to the Er everytime there is swellung in the face area or dp you just wait for the swelling to go down

June 17, 2017

Bobbi

Hi Shuntae,

I’m so glad you reached out with your question! Remember to work closely with your doctor to have a plan in place for emergencies. In general, if the swelling in a patient's face spreads to their throat, they should seek emergency care right away as throat attacks can be life-threatening.

I hope this was helpful!

All the best,

Bobbi

July 07, 2017

Add Comment


The information on this page is owned and controlled by Shire. All submissions will be reviewed and must be approved by Shire before being posted. Comments that do not directly relate to the topic, are factually inaccurate or misleading, or are spam, inappropriate, use profanity or are defamatory will not be posted.

Please keep your comments respectful, appropriate and do not reference any product names or product information. We will not post comments that include drug names or descriptions. Please note that Shire may choose not to post, or may remove, a comment for any reason at any time. Comments on the page from members of the public do not necessarily reflect the views of Shire and Shire does not endorse any content added by other users.

We are required to record and handle the submitted comments in a specific manner to monitor the safety of our product. If you have experienced a side effect or have a complaint specific to a Shire product, please contact your healthcare provider. In addition, we encourage you to report the event to us by calling +1-800 828-2088 or +1-888-300-6414, where someone is available to speak with you.

The information on this page is intended for residents of the United States only and is not meant to substitute for the advice provided by a medical professional. Always consult a physician if you have health concerns.

What is FIRAZYR?

FIRAZYR is prescribed to treat acute HAE attacks in adults 18 years of age and older.

Get the facts »

Upcoming Events