Keeping blood pressure under control is extremely important, since hypertension (high blood pressure) is a risk factor for both stroke and heart disease. Finding the correct blood pressure medication for a given individual may not be easy, however. The prescriber may have to resort to trial and error to find one that is effective without causing unwanted reactions. In many cases, the best medication may be an ACE inhibitor. But these popular drugs are not innocuous for everyone. Some people experience a potentially deadly reaction called angioedema that they must never ignore.
Health care providers prescribe lisinopril (Prinivil, Zestril) more than most other blood pressure medications in the world. At last count, that is over 21 million Americans were taking it. It belongs to a class of drugs called ACEis (angiotensin converting enzyme inhibitors) that includes:
Common ACE Inhibitors:
- Benazepril (Lotensin)
- Captopril (Capoten)
- Enalapril (Vasotec)
- Fosinopril (Monopril)
- Lisinopril (Prinivil, Zestril)
- Moexipril (Univasc)
- Perindopril (Aceon)
- Quinapril (Accupril)
- Ramipril (Altace)
- Trandolapril (Mavik)
Such drugs are effective for helping control hypertension and many people take these medications without experiencing any side effects. That’s the good news.
Angioedema Is a Serious Reaction to ACE Inhibitors:
The bad news is that some people are susceptible to a potentially lethal complication of ACE inhibitors called angioedema. In this condition, tissues around the face and neck can swell rapidly. Without immediate emergency treatment, angioedema can be life threatening. The symptoms can surface within a few hours or days after starting on the drug. But even people who have been on an ACE inhibitor for months or years can develop angioedema. Although both physicians and patients may find that counterintuitive, it is a well established phenomenon. The pandemic may have made this problem even worse, because of the affinity SARS-C0V-2 has for the ACE2 receptor (BMJ Case Reports, Sept. 9, 2020).
At the very first symptoms of swelling do not delay: CALL 911 and be transported to an emergency department instantly! Don’t just take our word for it.
Here is a report posted to our website from Dennis:
“On October 8, I saw my doctor and was prescribed 20 mg of lisinopril 3 times a day. I thought, ‘Great, now I have some meds to help with my high blood pressure.’ I think it was around 185 over 110, which the doctor said was pretty high.
“By the 12th of October, my tongue had been swelling every day to the point that breathing was getting very difficult. This was all happening by the fourth day of taking my new blood pressure medicine.
“My son took me to the ER on the 12th. The nurse in ER took my readings and said my blood pressure was in heart attack territory at 225 over 170. I was taken back to a room to be examined, as my tongue was swelling so much. Not one doctor knew what to do. I really thought I was going to die from suffocation, as breathing was almost impossible at this point.
An Induced Coma
“By this time other family members were arriving and for two weeks I don’t remember anything other than what I was later told by family and doctors. The doctors put me in an induced coma. Doctors had to do surgery and perform a tracheotomy so I could breathe during my coma.
“They diagnosed me with angioedema caused by taking lisinopril!
“During my coma I developed pneumonia and also had to be put on dialysis. The doctors told my family that they should all be nearby because I wasn’t expected to live through this ordeal. They told family members only about a half percent of patients make it through a situation like mine.
“When I woke up from my coma after two weeks, I couldn’t walk, talk, or even write a simple sentence. I started my therapy in the hospital and it sure was difficult. After great hospital care and help from family and rehab, I was able to walk and talk and write again. It seemed like it took forever, but my goal was to do my rehab and be home by Thanksgiving. I pushed hard and did accomplish my goal but I don’t think I deserved to almost die and lose two months of my life for something that was not my doctor’s fault or mine.
“When my doctor saw me next he let me know he was so sorry and told me he kept checking up on my health daily. He even cried when we talked about my ordeal. People taking lisinopril need to know about the hazards of this drug.”
Another Testimonial About Angioedema:
Dennis was lucky indeed to have survived. His angioedema reaction came on within days of starting lisinopril. Other people may let down their guard because they have taken an ACE inhibitor safely for years.
Here is Ruth’s story:
“My brother was on lisinopril for two to three years with no problems other than an irritating cough. However, last month he woke up with a very swollen tongue. By the time he got to the ER, his respirations were down to about 85% and he was having trouble talking.
“The ER called for an emergency triage and the ER doctor came out, rushed him into a room, actually helping strip his clothes on the way. They gave him adrenaline, and IVs. They told him if he had been a little later waking up he might not have made it, and that most people with this serious a reaction can end up on a ventilator.
“Don’t mess with swelling of the mouth or trouble breathing. It could be a bad reaction. We are only five minutes from the hospital, and he was terribly close to stopping breathing and ending up on a ventilator.”
Symptoms of Angioedema:
Any swelling of tissues around the face, mouth and throat are a tip-off that something bad is happening. Some people report numbness or decreased feeling in the affected area. The eyes and lips can also be involved. If the throat and tongue swell, there can be the sensation of throat tightness and breathing can become difficult or impossible. Now you understand why this is a medical emergency! Physicians who have studied this complication emphasize that once a person has experienced angioedema, they must never take an ACE inhibitor again (Current Hypertension Reports, June 8, 2018).
Angioedema is not restricted to the head and neck. Hands and genitals can also be affected. When angioedema strikes the intestines, it can cause abdominal swelling or distention and in some cases bowel obstruction. We have heard from many patients that this condition can be hard to diagnose.
Here are some stories:
“I was put on lisinopril for high blood pressure in January. That month I experienced severe stomach cramping and vomiting. I was rolling on the floor in agony. The doctor said it was most likely the flu but started me on two different antibiotics in case it was bacterial.
“A few weeks later I had another attack with severe stomach cramping and vomiting. I went to the ER, where I was given IV pain meds. A CT scan showed small intestine inflammation partially blocking off my bowel. I was sent home but returned the next day with pain that was a 10 on a 10-point scale. The doctor said that all the tests had been done and there was nothing he could do. I was sent home with pain medication.
“A few weeks later I was admitted to the hospital with increased small intestine inflammation and another blockage. After vomiting for 12 hours, I was released four days later with no definitive diagnosis.
“The doctors said most likely I had Crohn’s disease, but a subsequent colonoscopy was negative for Crohn’s. I underwent extensive tests, including endoscopy, and all were negative. None of the doctors made a connection with the drug lisinopril.
“After two months of missing work, three more ER visits and untold suffering, I found several other people who reported similar symptoms connected to lisinopril. I stopped the medication and have not had another attack. If you look on PubMed you can see reports on lisinopril and intestinal angioedema, but doctors don’t think to connect this with lisinopril because it is not listed as a common side effect.”
Another visitor to our website responded:
“I feel your pain, trust me. This reaction to lisinopril is the worst pain I’ve ever had, worse even than labor. It was ridiculous that they did so many tests and still couldn’t figure it out for so long.
“I know doctors think this is really rare. I had to look up the exact words ‘intestinal angioedema lisinopril’ to find it online. But I think when you get a prescription you should get information on all of the side effects. My doctors were considering removing part of my intestine at one point. If only they had realized sooner that lisinopril was the cause, I wouldn’t have suffered so long.”
NG experienced anaphylaxis:
“I too have been experiencing a lot of mysterious abdominal pain after switching the brand of lisinopril I was taking. After months of abdominal attacks that came with ‘allergic type’ reactions, I finally had to go to the ER because of an anaphylactic reaction.
“I saw an allergist who listened carefully and told me that lisinopril could have caused the reaction. It has now been two days since I stopped taking it and I have no abdominal pain at all. I have not been pain free for 5 months and am so grateful for an observant doctor.”
Christie reports a lengthy ordeal:
“Yes, this drug does cause angioedema. At least you were lucky enough (considering all you dealt with) to be diagnosed and treated in a few weeks. I had angioedema in my intestine and it took over two and a half months for doctors to figure out that it was the lisinopril because it’s such a rare reaction. They couldn’t believe I didn’t have the swelling in my mouth, throat, etc. as well.
“I don’t blame the doctors because not everyone reacts to medications the same. Unfortunately you don’t know if you’re allergic until you take it. There were only 22 reports of my allergy to it from 2000 to 2010 out of 80,000+ reports of various side effects.
“I wish pharmacies put the rare reactions on the info they give you about drugs but they usually only list the ‘common’ side effects. I am glad you are better. It’s a long road to recovery. I had two surgeries and spent a month in the hospital because of this medicine.”
Other ACE Inhibitor Reactions:
ACE inhibitors can trigger other side effects besides angioedema. The most notorious is a dry, hacking cough that is uncontrollable with cough medicine. This cough can be terribly disruptive and lead to vomiting. Getting a good night’s sleep can be challenging if you are susceptible to an ACEi-induced cough. To read more about this surprisingly misdiagnosed adverse drug reaction, check this link.
Ace Inhibitor (Lisinopril) Side Effects:
- Dry cough, uncontrollable cough, nausea, vomiting
- Dizziness, excessively low blood pressure
- Kidney function changes, BUN & creatinene elevations
- Digestive distress, diarrhea, abdominal pain
- Tiredness, fatigue, malaise
- Excessive potassium levels (requires immediate medical attention!), irregular heart rhythms, chest pain
- Elevated uric acid levels
- Sensitivity to sunlight (photosensitivity), skin rash
- Angioedema (swelling of face, lips, tongue, throat)
- Angioedema (swelling in abdomen, severe abdominal pain)
- Severe allergic reaction (anaphylaxis) requiring emergency treatment
- Toxicity to liver or pancreas
- Blood disorders
- Potential birth defects if taken during early pregnancy
- Sexual difficulties
Protect Yourself From Coughs & Angioedema!
Anyone who would like to learn more about non-drug approaches to controlling hypertension may find our Guide to Blood Pressure Treatment of interest. To our great dismay, many health professionals seemingly have a hard time diagnosing an ACE inhibitor cough or abdominal angioedema. You may want to read about how to protect yourself from such misdiagnoses in our book, Top Screwups. We provide essential tips to help you avoid life-threatening drug side effects and misdiagnosis, especially when it comes to drugs like lisinopril.
Share your own ACE inhibitor story (positive as well as negative) below in the comment section.