Angioedema

[youngliver]

Hi,
I haven't posted here in a while. Things have been going great for me over the last 6 months or so. I had a rough year in '07 and '08 has been a whirlwind (in a good way). The only thing that has me worried has been a re-occurring angioedema issue. I am setting up an appointment with a doctor next week, so I am not looking for any "diagnosis" here, just maybe someone who has had the same thing happen to them so I can be more informed when I get questioned next week.

I had a case of the hives once when I was about 8. Other than that, I haven't experienced anything of the sort in the last 30 years (I am 37).

About 9 months ago I started getting itchy blotches on my torso/hip region. I thought maybe it was something to do with an allergy so I cleaned everything in the house. Still happened. Thought maybe it was a food allergy, so I changed that. Eating the same thing for a few weeks resulted in random breakouts. Eating normal, random breakouts. Sometimes it would happen at night, sometimes I would wake up with them, sometimes while I was at work. Random.

I really didn't give it much thought other than an annoyance that I tried to figure out but couldn't.

Then about 4 or 5 months ago while at work, my upper lip blew up to such a degree that I was afraid that the skin might split. Nothing like this had ever happened before. I did a quick check on the internet to self-diagnose and it said to take an antihistamine. It helped a bit. Since then, I have experienced the hives and the lip explosions, as well as the itchy, bloated hands (especially between the fingers that drives me batty) off and on.

Again, I took the Claritin and it seemed to help. When I get the hive-type spots they go away quickly but when I get the lip thing, it comes fast and now I have to take 2 claritin just to keep it in check. This last week, it happened around lunch time and I downed 2 right away. It seemed to slow the swelling but didn't stop anything. My lip was still huge when I was getting ready for bed so I took another one. When I woke up, it was a little better but still puffy. So I took another claritin while getting ready for work. Thats basically 4 times the suggested intake. It seemed to work after the 4th one but I still can't figure out what's going on. I've never had anything like this happen before.

From my research, alcohol and cinnamon could have these effects (with a 24 hour window of effect) but I've gone weeks without any alcohol with outbreaks and also drank alcohol and not had any issues. Same with the cinnamon.

Now, if you are still reading, is the scary part. Doing further research on the web, a lot of this has to do with white blood cells. Which parlays itself into cancer. Namely lymphoma. I'm not a hypochondriac by any means. Luckily. So I am not freaking out at all. But I was wondering if anyone has had (or knows of anyone that has had) any experience with this.

Any comment, good or bad, would be appreciated.
Mike

[tkinsley]

Hey Mike--

There are a lot of reasons to have angioedema, most of which ARE NOT malignancy-related. There are several types of adult onset angioedema hereditary angioedema (HAE) and acquired angioedema (AAE), which are fairly easy to differentiate based on history and a few simple labs.

Couple of questions: do your lips itch or hurt before they swell? Also, have you ever had eyelid, tongue, or airway involvement?

The hand swelling and the itchy rash on your body all fit with urticaria, or plain old hives. You almost never see HAE with urticaria elsewhere, so that's reassuring. The AAEs are divided into types I and II, and an idiopathic (we don't know what the hell causes it) variant. Type I IS associated with lymphoproliferative diseases, lymphoma being one of them. However, it is VERY rare. AAEII is even more rare, and is due to antibodies against one of the many constituents of your serum complement. The most common one is the idiopathic variant,and it's manageable with stanazol and other synthetic androgens.

Saving the best for last--the response to antihistamines makes me suspect that this is all just plain urticaria (50% of people will have angioedema with their plain vanilla urticaria). This can be caused by simply a ton of things--viral infections, tooth abcesses, sinus infections, drugs (antibiotics often kick it off, aspirin is also often implicated), as well as various foods including shellfish, strawberries, onions, garlic, spices, chocolate, tomatoes, cheese, and peanuts (that list is not all-inclusive, btw), and, big bummer--alcohol.

Now, one last question: do you have hives and angioedema almost every single day, or is it episodic? If the former, you're in the chronic urticaria category, which 80% of the time, we never figure out the provocative factor. If it happens often but not daily, or is episodic, it's most likely just recurring acute urticaria, and if you start to keep a log of what you eat and what you're doing every day, you can probably pinpoint the cause. Get ready to live on zyrtec for a while.

Let me know if you have any other questions. Hope this helps.

Tina

[youngliver]

Hey Tina,
Thanks for the great reply. I'm going to try and address everything in order...

My lips don't ever itch or hurt before an "episode" but I can kind of feel them go a bit numb. Usually the way I know its coming. No issues with eyelids, airways or tongue, thankfully.

I've been okay taking the antihistamines as they worked fine for a little while but what concerns me is that I've had to drastically up the dosage to see an effect. From 1 to 2 to 4 within the recommended amount of time.

And my episodes aren't daily but sometimes once a week, sometimes three. I've tried to narrow everything down, I just can't figure out what it is. It just surprises me how it has come around all of a sudden. I have never had anything in my adult life up until now.
Like I said, I am going to see a dr sometime next week so at the very least will be starting to figure things out officially. It's just frustrating to have to deal with something that seems so little but makes such a big difference in daily life. I have to make sure that I have antihistamines at home, in the car and at work. I've never had to deal with anything regarding any kind of medication before and I don't like it...

again, thanks for your reply. It's much appreciated.

[tkinsley]

I would recommend that you just take a scheduled dose of the antihistamine of your choice every day for the next couple of months. Your mast cells are primed to trigger(they are the cause of this stuff)--histamine is the trigger. If you block the receptors by taking the pill daily for a couple of months, the receptors (which are upregulated and increased in these conditions), essentially get a chance to normalize and settle down.

It's not forever for almost all people, just a couple of months. Scout's honor.

Antihistamines won't be likely to hurt you. Take zyrtec, 10mg, 2 pills every morning, and benadryl for breakthrough hives, 25-50mg every 4-6 hours as needed.

[youngliver]

hmm. I actually did result to just taking a claritin every morning for about a week about a month or two ago but didn't keep with it for an extended amount of time. Maybe I will take your advice and try it for a couple months and see what happens when I stop afterwards.

Again. Much appreciated. Although my friends at work might be bummed. No more homer simpson look-alike days with the bloated overbite.

[tkinsley]

PS you still need to see your doc. Since I can only virtually "see" you by what you're telling me, I am in no way giving you firm medical advice... just so we get that disclaimer in. I'd like to keep my malpractice slate quite empty.

[youngliver]

What? Are you saying taking medical advice from an internet post is a bad thing?

I will still go to the doc but I appreciate your taking the time to post.

P.S. I went hiking yesterday and my hands were so swollen it was an effort to make a fist. So annoying. I bought two boxes of antihistamines on the way home to stock up.

[freddie]

hey i have found a page angioedema where you could have some information about your disease and perhaps find some treatment to it

[Anonomous]

I don't know if you are still following this thread, but if you are, please make an appointment to get to your doctor and get an Epi-pen or two or three. There's no way to know if you'll ever need one, but if you do you'll need it very, very badly.

If your swelling on controlled by antihistamines, then great. You may want to add something like Tagament to it to completely shut down your histamine response. But if you have it under control you are blessed.

It's a PITA of a problem and some people with it (like me) can only be marginally controlled.

If you are still in this thread and want to email me, use: angioedema <at> morrisassociates <dot> us

[Roc1]

If you're still following along, I agree with Anonomous - you should have a few Epi-pens around just in case it goes for your throat! I have had Idiio-AE for over 20 years, with episodes once or twice a year. Unknown cause, but I think it has something to do with my cat (I've got to blame something)! Nonetheless, I control it with immediate intake of 40 MG Prednisone for 2-3 days along with Claritin every day. After it subsides, I stay on Clariting and ramp down the Prednisone in 10 MG per day increments for another week. Then, a Claritin every other day. My triggers (other than the cat!) seem to be any kind of sinus infection or other common-cold infection. My allergist has described it as an overload of allergens (pet dander) along with an infection at any given point in time as the triggering scenario. Seems logical. I have swelling in feet (almost always there first), and hands, sometimes groin and gut, torso - upper arm and face less frequently.

I have learned to live with it, and hopefully I'll outlive the blasted cat!

"What doesn't kill us males us stronger"

[anma]

Anyone else here have angioedema issues?

[scottman1013]

I am 27 yrs old and I have never been alergic to anything. About 5 weeks ago my foot swelled up and I had played softball the night before so I thought I had injured my foot it hurt pretty bad from the swelling and felt like i was walking on golf balls. Well it went away that day like 8 hrs later. I was surprised and didnt think too much more about it. Then one morning I was off to work and noticed my hand was a little red and hurt some. Then after 2 hours it was swollen so bad it looked like I had broken it. So I went to a clinic and they told me I had hives, which I didnt have any at the time. So I was put on some strong antihistamens. They helped some. I have an outbreak about every 48 hours on average. The longest I went without an attack was 3 days, I thought I was cured and then it came back with a Vengence and my lip swelled HUGE and then my tongue and throat have both swelled up. It mainly happens with my foot, then sometimes my hands, and I see hives randomly around my hips and arms every other day. I tried prednesone which really didnt seem to help and the side effects were horrible (terrible night sweats) and feeling lethargic. So I am off most the drugs except benedril and zyrtec, which seem to help. Its been like this for 5 weeks and I dont have insurance. I believe I have angioedema but dont think it is hereditary since I never had it before. The attacks seem to be less severe now but still about the same frequency everyday to every other day. I am going to try to take 2 zyrtec daily for a month and see if that helps. (This is pretty scary to me because my doctor really didnt know what to think at first and I have done ALOT of research on it and I probably know more than he does now on angioedema) Anybody else in the same boat? Any more Ideas? I'm glad I found this forum!

[Sandra]

I am feeling a sense of relief at finding this site; had first episode of angioedema in 2008 and have had maybe 6-8 episodes since (it's now 11/09). These are scary as heck, but, am understanding possible causes. All the things we eat: nuts, tomatoes, wine/sulfites, eggs, etc. Now to start eliminating. Allergist and GP could find no real trigger, but, literature suggests these foods coupled w/stress and a "cascading effect." So thanks for the previous posts. Am taking pediatric zyrtec, though I have read some negative things about zyrtec. But heck, I don't want my airway to swell...