Well, things have not been good for me the past 2 months.

My arthritis was accelerating, and my left foot hurting and swelling, fatigue, GI pain, in fact PAIN everywhere!
Then my tongue started getting bigger in my mouth, and my lips swelled some. I really couldn't even go out or shop anymore.

Then my bladder started burning from inside and my lower body swelled up one night in alarming pain.
I was an inch away from the ER. So I used ice packs for couple of days, and that helped a little, but I couldn't even SIT in chair!
Yousers!

I figured it out because the worst symptoms came at night about 2 -3 hrs after taking my night time blood pressure pill--- ACE inhibitor Lisinopril. That was the culprit.

I stopped it immediately and went to the doctor, and she surmised that this was drug induced lupus (DIL).

ACE inhibitors cause an increase in a biogenic amine called bradykinin. This is called acquired angioedema (but there are no hives involved). But I've been on ACE drugs for about 15 yrs.
Why NOW? My blood work came back normal...the autoimmune screen was normal. So I went online to research bradykinin in more detail and found HAE information (which is rather new). Hereditary AngioEdema has several types and as I was reading I saw MYSELF in the ATTACKS and history portion of the literature.

Here are two links with interesting information. Especially for women here, because one type of HAE involves estrogen.

https://docs.google.com/viewer?a=v&q...-YOiVLjSOaauNg

http://emedicine.medscape.com/articl...7-medication#4

I investigated the medications listed on these sites at CVS Saturday... one dose (injection) runs $ 10,000 wholesale each


This link is also very interesting:
http://www.haea.org/

Now, this is a rare condition...but it appears to be perhaps more common than previously thought. My doctor, for example, just had a CME course in this last year. Perhaps, the HAEA.org comments about mis-diagnosis may prove to be true in fact.

So at this point I am "washing out" the ACE inhibitor, going back in a month on a different blood pressure drug (beta blocker low dose), taking my home pressures 3 x a day...while my doctor goes back to her notes on HAE. The GI attacks I've had since I can remember, are the most common symptom. Mine were attributed to my birth defect called malrotation. But in fact may be just more intense and could have the angioedema connection.

So depending on how things resolve, I most likely will be going to an Immunologist for further evaluation.

Back on Lasix 3 times a week and have lost tons of fluid this way.What I thought was weight gain is now "fluid".
And lucky for me this last spell only affected my breathing some, and was not a life threatening emergency (like some patients get).

I have to say, the burning pain from the swelling was horrible.
And it made me think of the body burning reported here by many posters. Once I stopped the lisinopril, the burning stopped. But now I am going to ask people and you all will see this over time, if they are using a ACE inhibitor drug.

Here is a monograph on drug induced lupus:
http://www.lupus.org/webmodules/weba...=377&zoneid=17
This typically has normal ANA results.

and this quote from PubMed... adding lisinopril to the list of
drug induced lupus triggers:
The bottom line is: don't ever underestimate the drugs you take, for causing trouble..even if you have been on them a long time!

I did have a DIL...event from hydralazine, when I was pregnant. Both my knees swelled up after delivery, and I had to stop the hydralazine. Took over 6mos to resolve.

So at this point, I am much better, my mood and energy are back to levels of about 10 yrs ago! (don't blame age on feeling terrible either like I was).