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abbasgirl
07-02-2009, 01:51 PM
I'm not sure where to put this post. I hope I picked the right spot.

I wonder if anyone here has both lupus and angioedema, or only angioedema has been diagnosed so far?

Spanglishqueen
07-03-2009, 10:03 AM
I have not been diagnosed with angioedema but what I've read about it, it could either be an allergic reaction to foods or drugs or can be triggered by conditions such as leukemia, Hodgkin's disease, and connective tissue disorders (such as lupus). You may want to speak with your PCP about drug allergies. Hope this helps.

iseedeadmonkeys
07-03-2009, 11:10 AM
I must be dim or summin today but ive never heard of it.

ISDM

PEARLESS
07-03-2009, 05:01 PM
Yep Ive had it 2 times in reaction to medications Ive taken. Thank Goodness I was on prednisone at the time or it would have been anaphlactic reaction. Its not fun. Along with the angioedema comes the huge hives and then the horrible itching.

abbasgirl
07-06-2009, 10:29 AM
Pearless...has anyone tested you for a complement deficiency?

I ask because I have one and this is what is causing the angioedema...although I don't get the lip, tongue, throat, etc... swelling, thankfully. I do get hives but the rheumy that found the deficiency claims it could be causing part/or all of my painful symptoms.

Apparently there are different types of angioedema...hereditary, acquired, etc... and it is considered autoimmune. It's thought there's a connection between this complement deficiency and lupus, sjogren's syndrome, and other AI diseases I can't recall at the moment. Either one can create the other...I think. I'm having a time understanding this with my brain fog. I talked with someone from an organization just for this and she's suggested I see an immunologist that has experience with HAE/AE. I had no clue it could cause swelling like it can. From what I understand, it can cause anything in the body to swell...externally and internally. And it's difficult to find in lab testing. The test is very sensitive and it can be just as elusive as lupus.

I always thought I was just having allergic reactions when I broke out in hives. We couldn't always find the causes and the doctors would just say it must be stress.

widebody
07-06-2009, 01:41 PM
i don't have angioedema, but my wife has the hereditary version. It is much like lupus in that it's autoimmune, it's very hard to diagnose, and it's episodic.

There are a few specialists around - she's seen a guy aint Duke (his name escapes me). It can be really scary -- any mucus membrane (from throat to sexual organs and anything in between) can suddenly swell.

I'm no doctor, but I would not be surprised if there's a link b/t lupus and AE...good luck with getting a diagnosis/treatment plan, and keep us posted here!

Monique89
07-06-2009, 07:49 PM
Sorry, i have never heard of it....

abbasgirl
07-28-2009, 10:39 PM
Wbody...give your wife a hug from me please. I've been learning alot about HAE and it's so awful.

Do you mind me asking if she sees an immunologist? The friendly folks at HAE.org suggested to me I see an immunologist that has had experience treating patients with it. I've got two in my area that I can choose from, but no decisions yet.

I thought there was no way that diagnosis fit me before because all I could find out about it was...there are a lot of patients with lip, throat, eyes, or limb swelling...and I've never had that. Although I do have trouble swallowing but it's all the time, not like the typical HAE attack. I was surprised to learn that it can cause anything to swell. I read on the forum at hae.org if blood runs through it, it can swell. I'm still floored.

I saw a story on mystery diagnosis, I think that was the name of it, a woman with HAE and she had some of the same symptoms I've been experiencing. No swelling of the lips or eyes or limbs, but internally. I think they said it took the woman over 30 yrs for her diagnosis!

PEARLESS
08-29-2009, 07:57 PM
abbasgirl
? complements. I do have love C3, C4, and CH50. No one ever went on to tell me why I have had so many reactions before. Thanks, I think Ill check into an immunologist too.

abbasgirl
08-31-2009, 09:17 AM
Hi Pearless.

From what I understand, you need to make sure you find someone that has experience with it. The folks at hereditaryangioedema.com can help you find specialists close to you.

There's lots of info at the website. So much of it still goes over my head.