Posted on 06/25/2008 9:33:33 PM PDT by stlnative
I was wondering if there are any other FReepers who suffer from chronic non-allergic Angioedema and Urticaria (Hives).
I have been through allergy tests (blood and scratch). I have had many autoimmune disease tests done. (Thyroid, Lupus, Lymphoma, etc)
Everything has come back negative so far. (I just had 15 different lab tests completed)
The only prescription med that would keep it at bay 90% of the time was Prednisone, but my specialist has taken me off the Prednisone due to the effects of long term usage of it. (I was on a low dose of 5mg to 10mg a day).
I am on 3 other types of prescription medicines but they are not working. (I have been on just about everything there is out there for Chronic Hives and none of them work to keep it at bay.)
I have been suffering from this since the very beginning of February 2008 and it is wearing me down both mentally and physically.
After more research I found out it can not be Acquired Angioedema (AAE) or Hereditary Angioedema (HAE).
AAE = is very rare and anti-histamines do not reduce the swelling in AAE. (I have had Benadryl reduce the swelling in my throat)
HAE = because I have not had the problem since I was a child.
The different types of Angioedema...
http://www.hereditaryangioedema.com/angiotable.php
from the bottom of the above page...
The medical literature and practitioner experience confirms that corticosteriods (Prednisone), antihistamines, and epinephrine are not effective in treating angioedema created by C1-inhibitor deficiency.
The presence of urticaria associated with angioedema usually suggests a diagnosis other than HAE or AAE.
Hello, my husband suffers from what we believe to be hereditary angioedema, I presume you may have the same condition, he is currently undergoing the c1 inhibitor test to confirm. We are hoping that after 5 years of chronic swelling that this may be the answer. We are hoping that there will be a medication to keep this under control. I will try and keep in touch and let you know if we find anything to help manage this disorder.
I did some research and there are several kinds but that looks just like his.
Does it itch? His did not itch terribly bad.
Did you have strep throat?
Does he also get hives along with the swelling?
You do know about the HAE website?
http://www.hereditaryangioedema.com/
As far as I know there are no medicines allowed in this country that will control it. There are trials going on in the USA and you can find the info on the website I just posted a link to.
I pray he does not have it and that I don't either.
What meds has he been on?
I am going to email you privately so that I give you idea of what I have been on and what I go through. Maybe we can compare notes if you like.
I do suggest that you both look up what foods are high in in histamine and completely avoid them and then slowly introduce each of the foods one at a time into his diet. (one high histamine food a week - and wait 7 days before you try another)
It is not that he has a food allergy but that foods high in histamine will make him swell up more often. So far on the list I have found that sauerkraut may make my angioedema worse because it is fermented.
No Strep Throat and nor is it psoriasis.
Angioedema is the key that it is not a skin disorder.
I also want to tell you all that even though the hives look terrible and feel terrible. They do go down (sometimes in a couple of hours and sometimes it takes about 24 hours) but they do go down and all the redness disappears. There is no sign on my skin that I even had the horrible hives.
The problem is one area will break out, it will last a couple hours and up to 24 hours and poof it is gone. But in the meantime I may get another patch of hives somewhere else on my body. Most of the time I have several outbreaks of hives on my body several times a day in different places on my body.
My skin does not break open, it does not ooze, there are no sores. Once the hives go away the intense heat, burning, redness and itching goes away in that area along with the raised hives.
The hives come from the deep inside. I feel the burning deep in my skin before they even show up on the outside, as they reach the surface of my skin the burning becomes more intense, then comes the redness, then they raise up on the skin, and then they severely itch.
Once the hives in one area are done causing me misery, they go away like they were never there. Then they decide to come out in another place on my body within minutes to a couple of hours after the first patch has fizzled out.
This repeats over and over everyday. Sometimes the size and scale of the hives can cover a large area and other times they only cover a small area.
We are fortunate that we live in Australia, so if my husband does have HAE then treatment should be available.
He had been admitted to the ER near our home, twice last month, with severe swelling of the face and hands, and they pumped him full of antihistamines and it resolved nothing. I then went on a search for something that might explain his condition and came across HAE. In my search I had found the website you mentioned and it was like a godsend to us as no one had been able to shed any light on what condition he might have.
When I showed my husband the photos of the gentleman on this site, he almost cried, to think he was not alone, meant so much to both of us.
My husband did have hives as a child, but now only seems to get the swelling in varying degrees and parts of his body. He tends not to get any finer rashes when he is going through the swelling.
We will have a result to his test in about a fortnight.
Thankyou for your advise on the histamine foods. My husband is also aflicted with the abdomenal swelling and this information might help us identify some “triggers” as over 5 years we have been able to put our finger on any of them.
As far as meds go, only general antihistamines have been prescribed, and now we know they are of little use.
So for us a little bit of a wait and see game.
He has been referred to a specialist allergy/imunology clinic here in Melbourne at the Alfred Hospital, but there is a long delay in appointments and his has been set for Late October. If the diagnosis is positive then maybe I will send a letter explaining the urgency for him to be assessed.
Thankyou for your time, look forward to conversing with you again.
so, i have unexplained hives too...i also had to CVAs (strokes) at 24 and do not smoke. the only thing they could relate it to was the NuvaRing and its hormones in my bloodstream. i took that out and still am getting hives.....wondering what it could be....
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