Thanks, Bryanna. I get my LEF enteric coated bromelain from Amazon. About the same price.

When I have my spells, there are no hives, no itching. My stomach and back get hard and stiff, and I cannot bend. There will be pain in the whole abdominal area, and eventually diarrhea. When I was younger there was also alot of vomiting.

I have a natural inclination for higher testosterone. It showed up when I was pregnant 30 yrs ago in testing. Also I had elevated 17 keto steroids which are androgens. I had testing because of infertility. My internist thinks this suppressed the angioedema like the androgen treatments given today. I could not tolerate birth control pills back when they first came out...and I never accepted HRT for menopause for that reason.
My doctor thinks my testosterone is going down with age (I am over 60 now). That combined with the evil lisinopril, pushed me over the edge into a nasty crisis.

I've lived with these reactions, and GI attacks since I was very little. More than 60 yrs. I ended up in the hospital for 10 days when I was in my mid 20's but by the time they did all the tests, the attack was over.:rolleyes:

Hives are typically a histamine reaction. So an epi-pen would work for that, and any anaphylactic response in breathing.
But for bradykinin angioedema, which I have, neither epinephrine or corticosteroids really work. Epi is so-so. Mostly for laryngeal spasms they have to intubate HAE patients. Luckily my breathing hasn't been that bad yet. It is labored but not blocked and not all the time either.

The bromelain is a bradykinin receptor blocker. It has little or no actions on histamine receptors.

It is really important to make this distinction.
When I had my crisis, I came home from the doctor and started a chemistry search on bradykinin since this is the villain with lisinopril.

It was while doing this, that I found the HAE websites, which seem to be new, and perhaps even funded by the companies making the new injectable drugs. Pfizer is one of them. When I read the triggers, and thought back to my spells, well, they always had some trigger. Needles, invasive procedures, bending alot gardening, typing (repetitive motion), I was stunned. I thought up til then that angioedema was allergic.
But only SOME is allergic, the other, is bradykinin overload, from a genetic lack of C-1 inhibitor enzyme.

We have a pharmacist on PD here who says, he had 3 patients over time who died from a reaction to ACE inhibitors. And my son's friend's dad, had one a month ago (5 yrs into his treatment). Most doctors and pharmacists are told that the angioedema from ACE drugs, happens early in therapy. My reaction came 10 yrs into that therapy! That was my overload time!

So I am thinking... age, or some other thing is going on with this for me. Perhaps my own testosterone was suppressing it and now that shifted... as my doctor suspects.

So yes, I don't want to go right now, as I am getting over this lupus --drug induced lupus which is also in the mix. Then I live in a remote area with no power, in the summer. I can't really start some new drug therapy and go there safely. So when I get back in Sept..the lupus should be totally gone, as the red rash is fading but slowly. And after 60+ yrs, I can make it a few more months. My doctor found a heart murmur last week at my check up... so I have to have an echocardiogram next. One thing at a time for me...I hate doctors! LOL

Your welcome Mrs. D... thank you for all that you have shared here!

I really think that more people have this condition than realized. When I reflect on my career and remember all of the times patients reported swellings and/or hives (unassociated with dental issues) but never had a clear diagnosis of those episodes. Quite frequently, as I review the medical history with the patient, they report new medications which most often are for anxiety, allergies, indigestion or all three. I realize these are "popular" meds but they are also often prescribed for certain cases of angioedema. Age seems to have no barrier for these rxs either. Recently a college kid came in and informed me that he's on Zantac and Singular daily with occasional use of Benadryl for hives and swollen eye lids. Without any testing, his doctor told him it's probably an allergy to his cat. I mean maybe that is his problem but perhaps a quick skin prick test would clarify "that" diagnosis?? About 3 weeks ago I had a middle aged woman sitting in the waiting room.... and the left side of her face blew up. She seemed oblivious to this so I asked her if she was aware that her face was swelling. She said yes, this happens from time to time.!! She's been to her doctor and an allergist, was diagnosed with possibly Angioedema but has never undergone any medical testing .....so she carries a script for prednisone and takes it anytime she swells!

Yea, I believe that you can have a negative reaction to any medication at any time irrelevant of how long you have been taking it. I see that often too.

Mrs. D, hopefully you will come out of this crisis feeling strong and well enough to pursue the testing. In the meantime hopefully you will be episode free!! ;))

I too hate doctors!! My mom still asks me why I ever went into dentistry... she then reminds me of how much I've always hated anything to do with doctors or dentists!! LOL!

Hang in there lady.... we are stronger than we realize sometimes.. Thank God!

Bryanna

trying to contact bryanna
 

Bryanna -

I have gathered that you have quite an extensive knowledge in the dental field. I am getting married in 3 weeks - in the last 4 months I have had two apicoectomies after 2 failed RCT's - I developed a fistula this weekend and X'rays at my general dentist showed the infection is still there - I would really like your insight as to what I should do - If you could please contact me privaltely on this I would appreciate it!!

Hello
You would be best connecting with Bryanna via our dental forum.
I have copied your post over there and here is the link to it
http://neurotalk.psychcentral.com/sh...d.php?t=185703

hi Jackie, I had a 'mystery illness' and now diagnosed. I want to chat to you more about your daughters symptoms if you are still coming online because I don't want to send you off in the wrong direction by posting about my disorder - which is very complex - and possibly steering you in the wrong direction. best wishes M