Friday, 30 November 2012

The Life That We Go Through (With IA)

We had a new member who joined our Idiopathic Anaphylaxis support group last month. This is Candace's reply to her e-mail. (Candace has given me permission to share this here). Hopefully by reading this, you would 'develope' some empathy and understand that nobody wants to be 'sick' and that Idiopathic Anaphylaxis is not some imaginary sickness. And we are certainly NOT crazy!


Welcome to the club that no one wants to belong to. 

Most of us in this group are diagnosed with "Idiopathic Anaphylaxis," which means that we can have anaphylaxis for a variety of reason -- not all of them "allergic" -- or for no reason at all. Some of us have food or environmental allergies, but those, alone, are not enough to account for all of our attacks. Some of us have the symptoms of mast cell degranulation (for example, diarrhea, hyperacidity in stomach, hives or swelling) on a daily basis -- even if we don't progress to full-blown anaphylaxis. 

Some of us just have an occasional, discrete episode of anaphylaxis, and carrying an EpiPen (or two) at all times is enough. But for others of us, it may take lots of meds to control our attacks. I've had IA for 40 years now -- in fact, I have had it longer than it's been a disease! <grin> In my case, i need a regimen of daily medications to keep me from having anaphylaxis. 

Two uncommon medications that really help many of us are:
Gastrocrom (sodium cromolyn), which is a mast cell stabilizer. Taken daily, it can really help, especially those of us given to severe GI symptoms.
Ketotifen, a first generation H1 antihistamine that has strong mast cell-stabilizing properties. It is not available in the US, but with a doctor's prescription, we can get it from Canada or another country. Taking between 2 and 8 mg per day of Ketotifen has stabilized many of us.

Also, being on a leukotriene inhibitor, like Zyflo, Singulair or Accolate, can help to stabilize us. And taking daily H2 antihistamines (Zantac, Pepcid) can help with the stomach hyperacidity that many of us are prone to. 

How much medication, and what kinds, that are needed to suppress your attacks varies from person to person. I tend to take a _lot_ of meds, and so I'm a fairly extreme example. My daily regiment, right now, consists of:
12 ampoules of Gastrocrom (mixed with water)
4 mg of Ketotifen
2400 mg of Zyflo
20 mg of Chlorpheniramine Maleate (12 of that at bedtime in extended release form), another 1st generation antihistamine with mast cell-stabilizing properties
100 mg of Atarax (another old H1 antihistamine that's good for skin reactions, like hives)
600 mg of Zantac (ranitidine)

With all that in me, I'm fairly stable as long as I'm in an environment that doesn't contain things that are known triggers for me. In my case that includes, raw cut onion, burnt toast, fresh asphalt, artificial scents or perfumes, and a bunch of other odd things I've managed to suss out over the years.

In my case, if they do skin testing, I react to everything in the world (except oak trees?!?), but on RAST (blood testing for antibodies) I show no allergy to anything at all. I asked my IA specialist what this meant, and he said, "It means that you're broken!" In other words, folks with IA do not follow the rules that folks with "normal" allergies follow. 

There are folks at Brigham and Women's Hospital in Boston (Drs. Mariana Castells, Cem Akin, and Richard Horan) who really understand this kind of disease. Seeing one of them could help you, and they are usually good about doing telephone consults with a local doctor to help figure out how to get your attacks under control.

I am living proof that one can live a good, long time with this disease (I've met two other women who've had it even longer than me). It's important to avoid anaphylaxis, because there can be a kind of snowball attack: The more attacks you have, the easier it becomes to have another. So, the most important job right now is to get the attacks under control. (Also, anaphylaxis is extremely hard on your heart.)

You might find some of the articles on my website, the IA Information Center, to be helpful. You can access it at or Also, according to the medical literature, about 50% of people with IA go into remission after a time -- so if you're lucky, you may get over this as mysteriously as you came down with it. But in the meantime, you need to control your attacks.

I hope that something in what I have written is helpful to you,


  1. The skin allergy testing vs. the blood allergy testing, what does that really mean? Broken might be a cute way for a doctor to say "I don't have a clue", but there must be real meaning to it. I've always heard regarding allergies/antibodies the blood test is the accurate one, so in the case of IA, it's not allergies or antibodies causing anything, but the skin still reacts. What does that signify? What is it about the skin that makes it reactive?

    1. I have no idea, but I do know that the anaphylaxis that I had were non-allergic anaphylaxis.

    2. There might be some answers for you there. Figure out why the skin is reacting and it will give you an idea of what is causing it? You'd think someone giving those tests would know...but I've learned not to depend on the knowledge (lack of) of any health care provider.

    3. Yeah, the medical world may be advance in a lot of thing, but for people like us, it is very ill informed.

  2. P.S. Of course, chemicals are allergies either, but something is causing her skin to react....hmmmmmmm.