Mast Cell Disease & Hymenoptera (Insect) Stings

It’s that time of year again (yay!) so I wanted to highlight the risks that we as mast cell disease patients may face when it comes to insect stings and the potential for a fatal reaction.

Some patients or caregivers may not be aware (I certainly wasn’t!) that we can have fatal reactions to insect stings and that it means taking a lot of precautions and learning as much as possible about this rather frightening aspect of living with MCAD.

Some patients are even on venom immunotherapy for life because of it!

I have some personal experience with this topic already and it’s part of what led me to start realizing I had a systemic allergic issue going on (I already knew I had a systemic inflammatory issue happening) so it’s something I think about a lot.

Here’s what just a few of the researchers at PubMed are saying about the subject:

Patients suffering from mastocytosis and Hymenoptera venom allergy are at risk from a particularly severe sting anaphylaxis.

Patients with mastocytosis and Hymenoptera allergy require special attention, mainly because of reduced safety and efficacy of venom immunotherapy. Whether or not venom immunotherapy is given, such patients should continue to carry an Epipen indefinitely.

In all patients with anaphylaxis following hymenoptera stings, baseline serum tryptase should be determined. A value above 11.4 microg/l is often due to mastocytosis and indicates a high risk of very severe anaphylaxis following re-stings. Venom immunotherapy is safe and effective in this situation.

Just before my diagnosis and after a lifetime of somehow never being stung by a bee or a wasp I was stung three times in two years (thanks, universe!) and each time the subsequent reaction was worse than the one before it.

The first time it happened, I put my bare foot into my shoe to run out to the mailbox real quick and unbeknownst to me there was a wasp coming in from the autumn cold, trying to find a warm place to hibernate for the winter. When I shoved my foot into his cozy hiding place he stung me on the top of my foot. It swelled up and itched really bad and I felt awful (not for the wasp that I retaliated against by smashing it with my shoe, just in general). I was dizzy, my heart was pounding, I felt nauseous, and at first I thought it was just from the surprise attack combined with the fear of having been stung for the first time (plus it really freaking hurt!) but I was really sick for a few days afterwards, which was probably my first clue.

The second time, I was sitting on my front steps and leaned back into one, and he stung me on the forearm. That time it swelled up even more than the first and I felt all the symptoms again — dizzy, heart racing, nauseous, etc. I took Benedryl this time and it let up after a bit but it did worry me that the second reaction was noticeably worse. I thought either he had injected more venom into me or I had a “venom overload” or something since they happened within a couple of months of one another.

The last time it happened I was stung (and bit) by a really angry wasp (again!) on the side of my other foot while walking through the grass with open-toed sandals on and pretty soon my entire lower leg began to swell and I had all of the other symptoms like before so it was really scary. This was also during the time when I was using estrogen cream (a mast cell trigger) and had hives from hell coming up on my torso anyway.

I used Benedryl again, this time in a higher dose, to intervene and it worked again, thankfully, but I should have called 911. I just didn’t do it because, well, I am not sure why! It felt surreal, to be honest.

In hindsight, in a way I am glad I got stung like that, even though it could have been fatal. Like I said, it made me realize I had bigger issues going on and I began to see things in a different way. These experiences, along with weird food reactions I was having at the time, led me to call the immunologist. Since my diagnosis I have read several stories of patients dying from wasp or bee stings and it scares the crap out of me. At least I know now just how important it is to carry my epipens and a cell phone to dial 911 everywhere I go and also to do my best to avoid being stung in the first place, just in case the next one is fatal.

And it very well could be!!

I am not trying to be overly dramatic here, it’s just the reality of this disease. Whether you have MCAS or mastocytosis, if you are sung or bit by a poisonous insect the risk for anaphylaxis is there and it’s important not to ignore it, especially now that the wasps and bees and other critters are awake again.

After my reactions I am still debating whether or not to pursue venom immunotherapy with my doctor (we’ve discussed it) but for now I’m just doing what I can to minimize my exposure to wasps and bees altogether.

Here are a few tips that I’ve learned on how to minimize exposure risk:

  • use wasp traps (follow directions carefully)
  • remove hives and nests as soon as possible (the hubby does this for me)
  • wear long sleeves and pants, a hat and gloves
  • don’t leave food and drinks out, it will attract them
  • keep screens on windows and doors
  • watch out for wasps coming in and hiding indoors in the fall and winter, they come out again in spring and will usually be seen in window sills desperately trying to escape!
  • call in the pros if necessary – DO NOT RISK YOUR LIFE!!

With our love of gardening the chances are I may be stung again, but oh well.  I think the view from my front steps is worth it:

At least now I am better prepared. I hope you are, too!!

Stay safe, it’s crazy out there…

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