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Angioedema facial swelling got me off hormones Angioedema facial swelling got me off hormones

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Unread 07-22-2012, 03:49 AM
Angioedema facial swelling got me off hormones

Hey there,

I thought I'd share what happened to me after my surgery (full monty at 39) in case it can help anyone. About 2 weeks after starting Estradiol, I started getting what I used to get about fifteen years ago, when I was on the pill: facial angioedema. I was in the ER 4 times with lip/face swellings (very painful and disfiguring) and once with my throat swelling. Doctors at first thought I was having sudden food allergies, but it turns out that I have a rare genetic familial defect called Type 3 Angioedema, and mine is estrogen dependent. The scary thing is that ERs can't treat the reaction with meds to get the swelling down, so it can be life-threatening.

The funny thing is since they diagnosed it and I went off HRT (about 2 weeks ago), I feel great. Haven't had one hot flash and my mood is steady. It might help that I'm eating super well, way better than I did before the surgery, too, but everything my doctors told me made me expect I'd go off HRT and hit awfulness within 36 hours, but I haven't. I sure hope it holds! Anyone else feel great after getting off HRT?
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Unread 08-02-2012, 11:38 AM
Re: Angioedema facial swelling got me off hormones

I wanted to write to let you know I had a similar problem with oral estradiol. I lasted only a week and had to get off due to facial swelling. A couple of years after my hysterectomy, I developed severe allergies to things/foods I'd eaten before without a problem. So after 3-4 trips to the ER, I now keep benadryl on me and an Epi-pen. During the days I took the oral estradiol I went from taking 1 or two, to 4-5 benadryl pills a day and still having some swelling. Couldn't play with it, so I got off. Now back to my 1-2 pills depending also on seasonal allergens. My doctor said I was one point off of having idiopathic angiodema- which may be why even though I don't eat the restricted foods, or exercise, I can still have some facial swelling. The other thing I wanted to mention is that so far, I have been able to tolerate transdermal HRT without a noticeable increase in allergic reaction. The reason I still do some HRT is that unfortunately I do not feel great not being on HRT. I just hope that once I find a combination that does make me feel close to myself again-I wont start having an allergic reaction. I'm sorry you had the reaction you did, but happy you feel better off HRT!

Unread 08-09-2012, 06:31 AM
Re: Angioedema facial swelling got me off hormones

Oh how I'd love to talk to you both! I had my ovaries removed 3 yrs ago and have been battling ever since. New symptoms keep being added to the picture. The latest is exactly what you all are describing. I feel as if my head is swelling. I've had severe burning in head, ears, scalp , eyes, chest with a swollen look in face, eyes. I had been trying to go back to using Divigel as well as starting on a vaginal estrogen Vagifem. I started taking Claritin however after reading your posts maybe this is more severe. How were you diagnosed with your genetic intolerances to the estrogen? I am really scared because I have been using the estrogen for hot flashes, energy, memory, concentration not sure where to turn with out it.
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Unread 08-10-2012, 12:11 AM
Re: Angioedema facial swelling got me off hormones

I haven't had genetic testing. I had a rast test that identified allergies to wheat, soy, dairy, spinach, apples, and nuts. Eighteen months after my hysterectomy I started doing Zumba. I'd always been an exercise person, a runner, but since dealing with the pre-surgery flow and energy drain, the most I ever rain was usually for 1/2 hr. Long story short I start getting the facial and throat swelling, and through a very scary process we determined an allergy to exercise. (I know- how convenient.) At first we though it was eating the foods and then exercising, but even when I don't eat the foods I still get huge hives and anaphylaxis if I don't take a lot of antihistamines. Honestly its been easier to just cut way back on exercising. It never occurred to me that I might be allergic to estrogen until I started the oral estradiol. I had facial swelling with the patch, but I not nearly as bad as the pills. But you are right about the meds not working for idiopathic facial edema. It never really goes away. So I was tested for idiopathic uticaria. I thought my allergist said that would also show facial edema. Anyway he said I was one number off away from the cut off for having idiopathic uticaria. He said we could do more testing to confirm it. Haven't done that yet. So while its possible I may have that, I'm really hoping I don't have allergy to estrogen. I remember my mom suffered from facial swelling. She lived on benadryl, but I thought it was because she was a smoker. She died of lung cancer. My sister also lives on (takes daily) benadryl. Wow.
Unread 10-12-2012, 12:00 PM
Re: Angioedema facial swelling got me off hormones

I have now been referred for the Type 3 test. My allergist told me to wait until a day I was really battling to get the test done. Well all I have to do is not take the benadryl. Will probaby go today. This has been a tough week for allergic reaction. Keep you posted.
Unread 12-07-2012, 01:35 PM
Re: Angioedema facial swelling got me off hormones

I took the test and met the criteria for Type 3 Angiedema. My allergist called me last week and wants me to get a new injector to use instead of the Epipen- that is called Firazyr or Icatibant? Kind of nervous about it because he wants me to go into his office and sign some papers, before he sends the Rx to the pharmacy? Not sure what that's about. I'll find out today. But he thinks I may have the genetic sub-type that is hormone dependent, because of my facial swelling intensifying since starting HRT last February and now having it to where I can function again. Things are not perfect, I still get night sweats, but the cognitive, memory, energy, depression have lessened tremendously. So I hope they don't find that the HRT I thought I was replacing are now causing or exacerbating another health problem. Life is difficult without HRT- and I'm afraid work might be impossible. But that's the next thing I think I do is the take a genetic test.
Unread 12-10-2012, 10:12 AM
Re: Angioedema facial swelling got me off hormones

Just curious for you ladies with allergic issues to estradiol. Did you have the same reaction to Premarin? Since it's a completely different type of med and comes into the body as estrone, I'm wondering if you had the same issue.
Unread 12-10-2012, 10:40 AM
Re: Angioedema facial swelling got me off hormones

Within 2 days of Premarin I had extreme anxiety.
Unread 12-10-2012, 10:42 PM
Re: Angioedema facial swelling got me off hormones

I have not tried Premarin. My mother took it. I know something has to give. My throat fills like its closing every day for the last month. Its like the benadryl doesnt help @ all. Bright side: the depression, fatigue, memory and cognition are very good, but the swelling is worsening Swelling was why I couldnt take the oral estradiol. Seems silly to think I could take one form of the HRT without having similar problems as another. But I was hoping.

Unread 12-20-2012, 07:44 PM
Re: Angioedema facial swelling got me off hormones

I asked my OBGYN about Premarin in light of the type 3 angioedema and she pretty much said dream on- that the Premarin would be stronger than the transdermal I am on. I will see her on the 27th. She wants to talk to the allergist. I hope they do talk. I dont know what to do at this point. I'm thinking I probably wont be prescribed any more hormones. I have enough to last a while. But from what I am learning, this is not good (an understatement) for the angioedema. A year ago yesterday is the day I changed my life forever. Super bummed out right now. And if its like it was before I found an hrt type and dose that helped, I'm afraid of the depression, fatigue, brain fog, memory, sleep, speech, and incontinence problems that may lay ahead. Please pray for me.

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