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Do I Really Need an Epipen? (Read 1261 times)
minnebama
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Do I Really Need an Epipen?
09/16/13 at 12:29:55
 
I ask because they won't give me one.

I'm pretty frustrated right now because neither the PA I saw in Mayo Allergy nor the General Internist I saw there will prescribe me an epipen. "There's no evidence your symptoms were a result of mast cell degranulation." Ok, so I have go into full blown anaphylactic shock and have a high tryptase number come back before they'll give me flipping epipen?

I'm not even sure the PA consulted Dr. butterfield with my question about whether I should have one or not. The PA referred me back to the Internal Medicine doc! Huh?

I'm so confused. My symptoms are all responding to the typical MCAD treatments and I have elevated prostaglandins per my 24 he urine. I also have two questionable episodes of anaphylaxis. Whether they're questionable or not, isn't that enough for a prescription? I'm kind of scared to eat anything or leave the house (I'm exaggerating a bit but it does make me nervous).

Kristy






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DeborahW, Founder
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Re: Do I Really Need an Epipen?
Reply #1 - 09/18/13 at 01:00:10
 
Have you ever passed out from your symptoms? That is my main sign that I am in anaphylaxis. You only want to use an epi pen if you are having an anaphylactic attack. For others, it can be their throats totally swelling shut. Anaphylaxis is basically when your organs are in great distress and shutting down. Mast cell symptoms, while totally debilitating for many, don't always result in anaphylaxis, and we don't want to use an epi when extra antihistamines could halt the symptoms.

So the reason I asked if you have ever passed out is to find out if you have had mast cell reaction symptoms or actual anaphylaxis. My classic symptoms when no one knew I was ill were that I would have severe diarrhea, flush, and pass out (with uncontrollable body tremors). So I definitely always have to carry 2 epi pens with me at all times. I keep my symptoms so well under control, though, that I have never had to use a. Epi and I don't intend that I will have to. My anaphylaxis moves in predictable stages. So as my early symptoms appear, I hit them with extra antihistamines. If the symptoms continue, I have even stronger ones to move to. IF the symptoms moved past that I would be passing out and that is when I would use an epi.

So the question is have you ever passed out from your symptoms or swollen up to a dangerous level? If you have, then you should have epi pens. If not, then I don't know. Many people have mast cell disease but aren't shockers at all.
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« Last Edit: 09/18/13 at 03:45:00 by DeborahW, Founder »  

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