Wednesday, March 19, 2008

If you're reading this blog you've probably read this already too

NEW YORK (Reuters Health) Mar 07 - Among children with mastocytosis, only those with extensive skin disease run the risk of severe anaphylaxis; all adult patients, however, are at risk, according to a report by German researchers in the February issue of Allergy.

In the first study to focus on the cumulative incidence of anaphylaxis among mastocytosis patients, Dr. Knut Brockow and colleagues attempted to identify risk factors in 120 consecutive patients at the mastocytosis outpatient clinic at the Technical University of Munich.

The researchers found that in children, the extent and density of skin lesions was a risk factor for anaphylaxis (p < 0.01 for each). In children, the severity of skin lesions was also correlated with increased serum tryptase levels (p < 0.03). No children with isolated mastocytomas developed anaphylaxis.

Among adults, in contrast, those with systemic disease, particularly those without additional skin involvement, had a higher incidence of anaphylaxis (p < 0.02). Some adults with cutaneous mastocytosis did, however, develop anaphylaxis. Overall, serum tryptase was higher in those with anaphylaxis.

The major triggers of anaphylaxis in this group of patients (where known) were hymenoptera stings, foods and medications; this did not differ from factors triggering anaphylaxis among patients without mastocytosis. Twenty-six percent of reactions in adults appeared to occur only after a combination of triggers, including alcohol, exercise and aspirin.

Anaphylaxis was severe in this study cohort and resulted in unconsciousness in 19 of the 36 adult patients who experienced it.

Because adult mastocytosis patients are at increased risk of anaphylaxis and there is no common predictor for it, Dr. Brockow told Reuters Health, all of them should receive an epinephrine autoinjector as a precaution.

Among children, however, "only those with severe skin involvement and high tryptase levels" need to have an autoinjector.

Allergy 2008;63:226-232.
I carry epi with me everywhere, both in an inhaled version as well as two pens. my husband and best friend have been trained in how to administer the pen and both are cpr certified too. My best friend used to work at Boston's Museum of Science, specifically with kids, which is why he knows the epi protocol and husband obviously learned it after i got sick, or became symptomatic or whatever you want to call it.

Not much new to report. My sleep schedule has been terrible, I wake up every few hours, and I can't figure out why. My mast cell dr thinks it could be histamines, but I'm not convinced. I'm going to see my neurologist soon, so we can discuss that. I'm also going to do a sleep study, but first we need to make sure the adhesive doesn't make me react

Monday, March 10, 2008


some days i swear i am just drying up from the inside out due to all my medications. between this and the soul crushing fatigue, i'm just at a loss at how the next 30-40 years of my life are going to go. every once in a while i think it is ok to be really depressed about this.