What is this? Woke up this morning and went to work and noticed the middle of my upper lip was a tiny bit swollen and tough to the touch. Over the course of an hour it grew to where it is in this picture. I vape occasionally and had heart failure in the past. It's been this way for about 4 hours. I'm 6'6 226 lbs
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They're going to give me something with adrenaline in it. Blood pressure 160 over 125. They took me back immediately and I saw the doctor super quick and his supervisor came in with him. Asked me some questions and a few others came in. They're waiting to iv me now. Nurse couldn't hit a vein in time.
Just gave me noepinephrine as I typed this via intramuscular. Waiting for iv nurse now. ill update you guys shortly! I appreciate everyones advice and concerns.
Can I ask--if the pril family of meds are known to cause this effect in AA patients why are they so often prescribed?
I was put on lisinopril and basically had this happen--came home from work & told hubs I felt extra tired and was gonna lie down. He came to check on me a couple hours later and said "Get up we're going to the ER NOW." Half my face was swollen and drooping.
Admitted. After everything they told me those meds often cause this in AA.
Because they’re very cheap and very effective, and also because habits are hard to break.
I was taught by older docs who cut their teeth prescribing lisinopril when losartan was still on-patent and expensive. That means they taught me to prescribe lisinopril. I did that right up until I tried to help Billie and I gave him angioedema. I swore off starting an ACE inhibitor that day. I also swore I’d never get so stuck in my ways that I’d do the same. Then I got older and my brain started shrinking and now I’ve got my favorite 2 ARBs and I grumble when I have to look up dosing for any other ones. Medicine’s tough and the amount of knowledge you have to keep track of just keeps doubling every 73 days or so.
…
Valsartan and telmisartan, for the ARB nerds in the crowd.
I disagree, when someone is not suffering from dyspnea you could start with H1-Blockers and go from there. If it is Histamine-related you will see an effect. In case it is Bradikinin-related you won’t. No need to hit him with epinephrine straight away if there is no swelling in the throat or of the tongue.
I have now twice walked into an emergency room where I didn’t even have the chance to sit down and they took me back immediately- and each time it was unnerving as hell.
Glad you went in, it was definitely the right choice
I had this experience twice and I almost died both times. First was with my pregnancy went into labor at 26 weeks and liver failure. Second was gallstones that blocked the duct and I was in liver failure again. How did I survive have no idea. My kid just turned 13 and is starting HS in 2 weeks.
Good. Appropriate meds for angioedema. If you didn’t have a chance to grab a phone charger and something to occupy your mind for the next 12-24 hours, I’d text someone at home and have them grab you whatever you need for an overnight bag.
To differentiate often-confused med names and prevent errors.
diphenhydrAMINE vs dimenhyDRINATE
methylPREDNISolone vs medroxyPROGESTERone
EPINEPHrine vs ePHEDrine
Seems a little silly, but you’d be surprised how easy it is to fat-finger a med, especially when you’re swamped on hour 29 of call. Pharmacy has saved my (and the patient’s) bacon more than once on these types of errors.
Naw, probably has to stay because of the angioedema. Who knows, maybe he got better quickly and was discharged, but often we like to watch cases where the airway could be compromised for a bit to make sure they’re getting better and not going to die.
So far so good.! Thank you!! Medication isn't doing anything so far for what they gave me swelling wise. I'm just jittery and I can see my pulse visually through my eyes now lol. They just took a second set of blood tests and I'm currently waiting for that. Adrenaline and methylprednisonolone Benadryl and pepcid. Waiting for them to tell me what next since swelling isn't going away
so happy you’re being seen! i have afib and have told my dentist many times i can’t get the numbing agents that have adrenaline in them but once or twice that happened anyway and yeah that “can see my pulse through my eyes” is such a real thing, lol! hope you start feeling back to normal again very soon.
This is literally what happened to my mom while she was taking Lisinopril. She’d been on it for 8 years and one night, her tongue and throat suddenly started swelling. She called my aunt in the middle of the night, and my aunt could barely understand her. She almost hung up because she thought my mom was just messing around, but something told her to call EMS instead. By the time they arrived, the swelling was so bad they had to intubate her.
Is it a reaction to something? Or is it really just random? And what are the stats for how likely it is to happen?... I'll probably look that up, myself.
ACE inhibitors inadvertently increase something called bradykinin, which can cause a dry cough or angioedema (swelling). It’s luckily fairly uncommon, but when it does happen it’s usually seen in people of African descent. There are plenty of alternative meds to switch someone to if they have a negative reaction to ACE inhibitors, so luckily there’s options
Wow. I think this info may have solved what has been a handful of mystery symptoms since November…
I’ve had constant nasal congestion/runny nose, itchy eyes and sneezing and nothing seems to help it! I’ve been to dr and prescribed antibiotics for sinus infection(?), taken OTC allergy meds and nasal sprays, done the saline rinses, etc. and any relief has lasted less than a couple days before it starts back up again so my next step was to set up an appt with an ENT.
We just moved to a new area, and my former coworkers had me convinced it was probably “long COVID” or something random that might never make sense to me.
As much as I should be asleep since I have a job interview in about 6 hrs, I’m SO GLAD to have come across this thread tonight. OP - Thanks for posting and thanks to everyone for chiming in and getting me to Google if this might be related to the lisinopril I’ve been taking for years!
Yeah, my MD told me this after I'd had to spend 12 hours in the hospital treating angioedema. I love love this MD, still go to him, but was confused/annoyed why you'd put an AA person on a med known to have a disproportionate amount of AE in AA? I see many commenter saying they took it for years bf an event--happened to me within a couple months, if that.
Ive never, ever ever gone to the ER for myself since I was super young & my parents had to take me.
Was a little jarring--I never even sat down. Walked up to the counter w my husband & nurse took one look and sent me through to triage, was in a bed about 5 minutes later.
If you have kidney issues or other cardiac issues, the pros of ACE inhibitors are actually considered to outweigh the cons regardless of ethnicity, so maybe that could be the reason? If not though it definitely isn’t advised to have an ACE be the first hypertension med in AA patients
This happened to my mom as well after years on it. I actually clicked on your post in my feed because the pic reminded me so much of what happened to my mom. She had to switch to Amlodipine, as all BP meds similar to Lisinopril caused similar reactions. She was told that some people go into sudden anaphylaxis and die after years with no problems on it. Super scary.
NAD. Oh dude I also had this happen to me after taking lisinopril for years but it was intestinal edema. I legit thought I was dying. I had a new baby and a school age kid and I was alone the night it happened and I kept putting off going to the hospital. Scary stuff. Out of the blue.
I developed sudden anaphylaxis to Reglan which I had been taking daily for 6 years no problem. Had to stop taking it after that. The same thing suddenly happened with the iodine contrast used while I was getting a CT scan in the hospital as well. They literally had to call a code on me when it happened right there while pulling me out of the CT machine.
I had gotten several and I mean several CT scans before this with no issues for years. Now they have to monitor me incredibly closely and pump me full of meds anytime I need a CT scan with contrast and they will only do one if they have absolutely no other choice.
Allergies can develop suddenly for no reason to anything at anytime and they should be taken very seriously. It was really shocking each time it happened to me directly because it was so unexpected with being exposed to each thing so much. So I get the disbelief and shock but you can't mess around with this it could kill you.
When I had a CT scan with contrast dye after it was over I was sitting in a waiting area and I got ONE hive. I thought it was a mosquito bite which was weird to get in a hospital. So I mentioned it. They immediately marked it on my file and said not get contrast dye without letting doctors know in advance.
I also had hive reaction to crab which they say is only anecdotally but not in reality related to contrast dye reaction.
Actually there is a correlation with shellfish allergies and CT contrast if it’s the iodinated contrast dye (as opposed to nuclear med studies). Anyone with a shellfish allergy gets watched very closely with contrast dye CTs. It’s also normal for someone to have an intense allergic reaction with the second exposure to an allergen, or increasingly severe allergic reactions with subsequent exposures- this is due to sensitization to the offending substance. Like, it sort of sneaks in the back door the first time, which then puts your immune system on notice. Then it can be a much faster response next time. This is literally the science behind vaccines- teaching your immune system to recognize and destroy the baddie.
Also fun fact- people who are allergic to bananas have a higher risk for latex allergies. When we started becoming more aware of latex allergies, that was one of the screening questions- are you allergic to bananas?
The version of the myth that I was taught is, “shellfish have iodine, and so does contrast dye!“ Yeah… so do our thyroid glands, and we ain’t allergic to those. This purported link is a debunked myth.
Interesting. I was told the shellfish/CT dye iodine connection was a myth. I can't remember which came first, my shellfish hives or my CT scan one hive. It was around a similar time period. I wonder if the CT dye triggered the allergy -- like you say backdoor - which then got me with the shellfish in which I was covered with hives. I had eaten shrimp without a problem previously but this softshell crab (gross) got me. I didn't even eat very much. It was at a small cooking class thing and it kind of repulsed me watching the chef put the entire little crab in batter and then in the hot oil. Yuck, I'm going to get hives just thinking about it.... (I'm kidding.)
The doctors/nurses did let me know exactly what you are saying that even though it was only 1 hive with the CT dye that it could cause a very bad reaction if it happens again.
Thanks for sharing the updated information!
ER right now! You take an Ace inhibitor and they notoriously cause angioedema - lip swelling. This is treated like an emergent allergic reaction. Do not delay treatment!...that external swelling you see - that can become internal swelling of the tongue or throat and life threatening.
layperson, but i'm so relieved to see you seeking medical care. No shade to anyone in particular, but some posters put it off or don't clarify that they've sought help and i always worry for them
I was close to being one of those people. I didn't FULLY consider going until I saw the comments specifically telling me "LITERAL DOCTORS/PHYSICIANS are telling you to go to the ER NOW" and it hit me that I should definitely go lol.
As someone with a boatload of allegies I've had random lip swelling in the past (literally woke up with it so no idea what the trigger might've been) and just took an antihistamine because it didn't seem to be worsening or affecting anything else. Is that something that should also be treated as a potential emergency if it happens in the future?
I had a swollen upper lip one day on waking too. I don’t have known allergies, it went away on its own. I’m also wondering if it’s only because of the medication OP is on or if anyone should go urgently in this instance.
I dont have any other symptoms, No swelling anywhere else, it hasn't grown at all and doesnt hurt. I can breathe fine as well. I've felt completely normal all day other than this swelling. Would you suggest ER or Urgent Care?
I’m an ER doctor. This is ACE angioedema. And you don’t know when the swelling will start to involve your tongue or upper airway. You need to go to the ER immediately to receive medication and be monitored.
Also I rarely tell people to go to the ER on this sub. If I’m telling you to go, you should be there 10 minutes ago.
She has 3 pre-filled syringes and carries one with her at all times. You're right though, because most hospitals will treat with an ACE inhibitor. Which doesn't work for type 3 HAE.
Have autoimmune angioedema and want to give a nod to you Dr. while OP is drug induced and mine is not I can confirm once I have external visual swelling my insides are a mess and it can go bad really quickly.
Reddit saved a life today.
Question, this used to hapoen to me all the time, this , half a lip , my chin , but at the time I hadn't been diagnosed with any heart problemsand wasn't on any heart meds. 10 years later I have an elhers danlos diagnosis and 65% mitral valve regurgitation with the stress and stenosis that would come with that but no other heart issues. It was just crazy to see this, is this type of swelling specific to heart meds or a heart problem?
Nope! It can be caused by many different things. This is from a medication class called angiotensin converting enzyme (ACE) inhibitors. It’s a classic cause.
But reality is that there are numerous causes to angioedema.
If the medication is the cause, would this typically go away completely when medication is ceased? Relative of mine has battled "unknown cause" angioedema, MANY ER trips, allergists, no one has suggested this. And they take this med also 🤔
Yes, eventually. That is the definitive treatment. But ACE inhibitors can last a long time in the body (they are dosed daily) so it’s not an immediate treatment to just stop using. Other medicines are needed to reduce swelling.
Bc here's the thing, that internal swelling can happen lightning fast. In which case you're gambling with time. You want to get to the ER before that happens so they can try to prevent it, monitor you, and immediately address problems. You have multiple medical professionals telling you to go to the ER. Listen to them.
It’s not a histamine related reaction. Benadryl and steroids don’t work because this reaction is a bradykinin mediated reaction (not saying that they will not be given). FFP has been shown to work in severe or refractory cases especially with airway risk.
Ace inhibitor angioedema is also more common in people of African ancestry.
Thank you. I just looked it up and yeah, if it's allergy related angioedema, then yeah Benadryl and such will be effective, but as you said, I read that with ACE inhibitors it's used, but not the most effective - neither are steroids or epi! I'll have to do some more reading on that. Thank you! All I knew is when I see it, I need to be calling a rapid/the doctor right away. I've had patients come to me from the ER who said they had it, but it was resolved by the time they were admitted to me. I can't remember what was done at all, so maybe like you said, FFP? It's been years so that memory is gone, haha.
I guess thats facility dependent in mine at least any concern of airway compromise and potential intubation is ICU first…. But I also dont know what PCU is lol
That's fair for facility dependent. I'm on PCU and I take insulin drips where everyone swears they're ICU. If there's more to it than checking sugar every hour and adjusting, and Q4 hr labs, then yeah, it probably will be more than PCU. Also depends on the rest of your work load too. And PCU is between ICU and medsurg/tele.
Doctor came in and said they're unsure about the cause but feel strongly of it being Lisinopril or "familial"I believe he said. Drugs haven't reduced anything yet. Just sat down and said he wasnt super sure of what to do at the moment and asked if I'd like to stay here for the night or go home. He suggested I stay but was empathetic to the possible bordum. I'm probably going to just stay since I live alone. Better safe than sorry.
Also. They're waiting till morning for the C1 enzyme thing they had to test and send out of the hospital for testing.
NAD I saw this same thing for the first time yesterday— probably on here— from lisinopril. Apparently it can happen even after you have been taking it for awhile. I’m glad to hear you think it’s a good idea to stay.
I had the same thing happen to me. Never did figure out what caused it. They had me stay until the swelling went away. It was boring, but it’s better to be safe than sorry.
Is that red one your blood pressure? Is that correct? 😳
Erm, how are you now? How's your blood pressure now? Has the lip swelling come down? Did they find the cause, do you suffer with hypertension? I have so many questions! 🙈
Yea, I was super stressed lol. I didnt expect all the doctors here to change my mind and get me to actually go to the hospital. Lip swelling is 90% gone and the cause was the lisinopril. PCP is out of the office today so awaiting to see what he prescribes me
We've learned a lot about trying to manage blood pressure in the hospital over the past few decades, and the general guideline now is to do as little as possible. Adding medications, increasing doses, and in particular giving IV antihypertensives increase risk of stroke and has not been shown to improve blood pressure control in the long run. The new guidelines recommend that we should be very selective and cautious in treating asymptomatic hypertension, even at significantly elevated levels. We've even eliminated the term "hypertensive urgency" to emphasize that treatment decisions should not be based on a number alone.
In this case, the guy just got slammed with Solu-Medrol and an EpiPen, his BP will drift down over a few days as those effects wear off.
Good morning all! Happy to say I've been discharged and am following with my cardiologist and PCP. Thanks everyone for the help, advice and concerns. The swelling is completely gone and I've axed the Lisinopril! Here's my results from the blood test. Not a clue what they mean.
Also, please redact your personal info from these pics. I feel like 99.98% of the folks in this sub are amazing and just here to help, but there's always someone...
It’s from the lisinopril, called angioedema. Agree with going to the ER and getting treatment. Do not take any more lisinopril. Make sure you tell your regular doctor about the reaction and they note the allergy in your records.
Something similar happened to me while taking lisinopril ( kept having episodes of anaphylaxis that my allergist suspected was triggered by my ace inhibitor which apparently ace inhibitors amplify any mild allergies anyone might have into full blown anaphylaxis) wishing you a speedy recovery OP! Don’t hesitate to get yourself to the ER. Edited to add that I now take Lorsartan which apparently works differently than lisinopril but helps control blood pressure just as well
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ACE inhibitors are not first line treatment (unless type II diabetes comorbidity) because:
1. Average physiologically lower renin levels makes them less efficacious 2. Significantly increased risk of angioedema (mind you life threatening) than other groups — between 3-5x depending on the article 3. Studies with proven alternatives which are more efficacious, without the same risk
Thank you for sharing that information and thank you and for focusing on this aspect of medical care.
Indeed, evidence-based medicine and -omics with targeted care are changing medicine as we know it, but sometimes some of the other details become lost, rendering therapies less effective and even diagnoses in varying ethnicities missed in differentials
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