C1 esterase inhibitor (human) for Hereditary Angioedema User Reviews

• Ang...
• September 18, 2013

Cinryze (C1 esterase inhibitor (human)) "Having been 9 months old when I was first diagnosed with Hereditary Angioedema, I am still one of the youngest cases on file. For the past 40 years, I have suffered with moderate to severe swelling attacks almost weekly. At times, life was almost unlivable, and the pain was often excruciating. Cinryze has changed all that. There are no more trips to the emergency room, no more narcotics or steroids that ultimately did nothing to stop the pain, nausea, and vomiting. I have a full life for the first time, and I am grateful beyond words. Additionally, my 11-year-old daughter, who also has Hereditary Angioedema, will not have to suffer the same way I did. In short, Cinryze has changed my life for the better."

• Anonymous
• March 3, 2011

Cinryze (C1 esterase inhibitor (human)) "I have had a reaction to this medication both times we have tried it, with fast heart rate, hypotension, and nausea and vomiting. My symptoms were a little better after starting with Benadryl and Phenergan. I was taking Berinert on the basis of about once a week, depending on swelling. I didn't have a reaction at all with this medicine. My doctor has suggested that we go back to using the Berinert."

• HAE...
• Taken for 1 to 2 years
• May 7, 2019

Haegarda (C1 esterase inhibitor (human)) "I’ve been using Haegarda for about a year and a half and find it to be a very safe med with few incidental side effects (bruising at injection site, sometimes). It hurts a bit at injection, but much less than other sub Q HAE meds. Most importantly, it works better for me than any of the other preventative I’ve tried, and I’ve used them all (but Takhzyro,) including Danazol. That said, I believe the initial marketing claim about “95%” efficacy was a problem for patients because insurance companies can say that we should only be using rescue meds 5% of the time when on Haegarda. EEK! In my experience, I use rescue meds 7-9 times a month, down quite a bit from the time before Haegarda. I still have attacks, but the are less severe, mostly. I recently had a severe knee injury and my attacks became uglier while the injury was most acute. As HAE is inclined to do. Overall I like Haegarda and am not inclined to change preventatives any time soon."

• DBa...
• Taken for 2 to 5 years
• December 4, 2020

Berinert (C1 esterase inhibitor (human)) "I have been on Berinert for years and take it prophylactically. I love it! Hereditary Angioedema (HAE) used to run my life, but now Berinert works so well I don't even consider my HAE any longer, I know it won't be a problem. I self-infuse at home."

• Anonymous
• Taken for 2 to 5 years
• November 23, 2024

Haegarda (C1 esterase inhibitor (human)) "Well, I’ve only had two swelling episodes in the last three years, and that’s amazing, but there are a lot of side effects for me that I don’t like and are bothersome, but not to the point where I need to go to the hospital. And I’ve never met anybody else that has this disease, other than me. And there are several other side effects. And administering it is very difficult, I can’t do it by myself. I wish there was something new that wasn’t as painful as administering it is and didn’t have the side effects that it does and it’s just as effective. But overall, I really like the medicine a lot. No more swelling or very little anyway. And I used to have a lot of attacks-several every month."

• fay...
• January 13, 2011

Cinryze (C1 esterase inhibitor (human)) "After suffering with this condition for 50 years, I'm very thankful this medicine is available, and it works terrific."

• Anonymous
• Taken for 2 to 5 years
• April 6, 2016

Berinert (C1 esterase inhibitor (human)) "very effective, results almost immediately. To find this after 50 plus years of dealing with HAE is fantastic"