Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Idiopathic Anaphylaxis http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1300031932 Message started by Starflower on 03/13/11 at 03:58:52

Title: Idiopathic Anaphylaxis
Post by Starflower on 03/13/11 at 03:58:52

I really should be cleaning my house, but... ;)

As you know I've been starting to read through the book that Dr. Castells edited, "Anaphylaxis and Hypersensitivity Disorders." Since the chapters are written by different authors, it really gives you a sense of how much is unknown about mast cell disorders and how much the researchers disagree about certain points!!

For example... there's an entire chapter about "idiopathic anaphylaxis." The basic premise is: give them some steroids and EpiPens and send them on their way... this disorder has a "good prognosis." Drives me crazy!!! It does NOT take into account just how disabling IA can be... or how much you can improve your quality of life through medications (other than steroids) plus lifestyle changes. We know better!

Anyway... other chapters treat the topic of IA in a very different way. For example, the first chapter on the definition of anaphylaxis (written by Phil Lieberman) recognizes three basic categories:

- Anaphylaxis due to exogenously administered agents (e.g. drugs and foods... I would also include radiocontrast)
- Anaphylaxis due to physical factors (exercise, cold, heat, sunlight)
- Idiopathic anaphylaxis

In this case, "idiopathic" doesn't really mean "I don't know"... it just means anaphylaxis triggered by some unknown factor inside the body. This could be estrogen, progesterone, FceRI antibodies, complement, bradykinin, thombin, a combination of these factors... there are many clues, but there is still so much research to be done! I say that my mast cell disorder is autoimmune (so does my hematologist), but in truth... nobody has studied the role of FceRI antibodies in systemic allergic reactions (anaphylaxis), only in chronic urticaria. There was ONE experiment... involving 10 people... and because they didn't find what they were looking for, they gave up.

Anyway... I feel better about the idea of "idiopathic anaphylaxis" now ;) I just wish they would get rid of the word "idiopathic." To regular, clinical doctors the word "idiopathic" sounds like "no big deal." Totally WRONG, but you have to educate them on why it IS a big deal... it gets very tiring and frustrating.

Heather

Title: Re: Idiopathic Anaphylaxis
Post by Riverwn on 03/19/11 at 07:36:02

Hi Heather :)
I agree with you... educating medical staff is SO important and sometimes we are just too sick to do it--and many times they wont listen anyway (How could we dare to tell them their job, right?).

I was REALLY hoping they would create categories with more symptoms so those of us with weird triggers dont have to argue that it IS anaphylaxis when we go in. Im pretty obvious cause they usually lose my BP BEFORE the ambulance arrives at the ER. I shudder to think of what other people have to do for appropriate treatment and diagnosis.

Thats why I think it is SO important for people to have notebook explaining their particular mast cell disorder and how to treat it--or at the very least people should carry their Dr letter saying how-to treat it, it gives us quick validity when we cant afford to waste time.

Hugs
Ramona

PS Please let us know what you think as you continue to read the book, I LOVE your analysis!