My recent health struggle!
 

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
:yikes:

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).

I guess all drugs have side effects for some people. I'm glad you're so knowledgeable about the interactions and where to go for information. I find it hard to be objectionable when I'm the one having a problem. Here's hoping you get it all sorted out soon. Joan

My grandmother had drug induced lupus years ago. Thankfully a doctor figured it out. I am not sure about the medicine, but it was a heart med that caused it.

I am so glad you figured it out. I am glad you can take Lasix. If I would ever need that it would be bad. People with POTS can't take diuretics.


I hope you continue to feel better and better. Yes, meds can be just awful for sure!

So glad you're feeling better! I hated lisinopril the two weeks I was on it.

My friend had Lupus, Rheumatoid Arthritis and Scleroderma. Auto immune (body attacking itself). She was healthy previous to all of this and not on any drugs. She had a car accident - hit by a train. Her Mom was with her and was killed. After that she got the above.

She lived a much longer life than expected for quite a few years. She did most everything. She couldn't get the nutrients she needed from her food so had to take pills. In the end she died a really awful death. Everything hurt, sheets, clothes, etc. She shuffled when she walked.

All concerned figured the accident brought it all on. Just sharing.

Glad your feeling better
 

mrsd I am so glad you are feeling better and thank you for sharing your story. It's a blessing that you are so knowledgeable.

Thank you :hug:

Really sorry to hear about your scare Mrs. D.

That sounds very frightening. The tongues swelling almost sounded like an anaphalactic reaction. It is fortunate that you have enough drug knowledge/information to piece it together. So many people can't until they are very damaged.

Wishing you better health.

Aussie :0)

oy! western med does have its down falls.....speedy recovery!

Hi Mrs. D.,
I am so happy you were able to figure this out. It is scary to think what happens to people who have no knowledge and can't figure out what is happening to them.
Thank you for sharing with us even in your time of need.
Kim

MrsD Iam sorry to hear of your health scare!!! Glad you figured it out!!!!