when to use the epi-pen?
Given the last big scare I had it's really made me think about the epi, how does one know when to use it? It's a very hard decision and one that's even harder to make in full blown shock when our thinking is so incredibly compromised. Sometimes anaphylaxis (ax) doesn't involve significant BP changes, swelling or urticaria, so this makes me VERY confused about the use of the epi as one doesn't want to administer it if not needed. What's worse is the ER confusion when they don't see the classical markers they tend to think this is not an AX event.
Anyone elses concern for use and/or any relevant tips would be much appreciated.
I used an epipen in April. I was covered head-to-toe in hives (WOW... the itching was SO BAD) with diarrhea and vomiting and I thought, "How much worse does it have to get?" The shot of epinephrine felt like drinking about 50 cups of coffee, but I didn't even feel the needle because so much was going on with my the rest of my body. I would do it again in a heartbeat. By the time I got to the hospital I was MUCH better. The ER doctor said, "Well... looks you treated yourself!" He gave me a prescription for a new epipen, a Medrol dose pack, and sent me on my way.
Incidentally... people with food allergies (my son is allergic to peanuts and corn) are advised to use an epipen at the FIRST sign of anaphylaxis... not to wait until they're on the verge of passing out. Why should we be any different? Waiting to treat yourself is a major risk factor for a fatal attack.
Great topic, as usual. Epipen's no longer work for me, although I recently learned at M.D. Anderson that people with systemiv mastocytosis are generally now told to carry two epi's and repeat in succession whenever "needed".
To you question of "when is it needed/warranted". I have had them originaly administered 4 or 5 times for blocked airways. Generally speaking, I recall only using an epi (until I became too tolerant that is) whenever I noticed swelling in my lips, fingers, or feet. Hope this is helpful.
Lastly, I know carry 100 mg of atarax instead of an epi as my "precaution" in case any anaphlyasis (sp?) begins.
I've had epinephrine administered by a doctor once but I've never done it myself. At that time I had airway compromise, urticaria and severe angioedema..... it was really obvious what to do then and they monitored me for 30 minutes as well as starting me on 50mg of prednisolone (they wanted to start it as IV but I declined) now for me the shocks are different, I'm attributing this partially, if not wholly ?, to the 3 types of antihistamines I shovel down now. I didn't feel that I'd had 50 cups of coffee, I've heard that as a sensation before, I actually felt nothing. It just stopped the itching and opened up my airways and probably saved my life in retrospect... I stayed swollen for 5 days!
Yet, this is a different scenario when/if I have to decide to use it myself.
I get mostly concerned about it's impact on the heart. If I had breathing constriction and it was obviously becoming worse I'd definately use it then. I just don't know when and if to use if for the recent shocks I've had.
Hopefully from other peoples posts I'll learn when they decided to use it and the symptoms they had at the time.
So yes, your posts are very helpful as the last shock I had really scared the crap out of me, hence throwing this line out.
Gil and Star did either of you know if your BP was low at the time?
Dr. Akin told me to use an epi pen if I felt like I was going to pass out. I rarely have breathing issues, so that was not part of our conversation. I generally start doubling my meds (per Dr. Akin) when I start getting ill. If that doesn't work, my last course of action before using an epi is to take a hydroxyzine pill (which I believe is the generic form of atarax). I only take 10 mg of it, and it works within 10 minutes for me. I respond very quickly, though, to the meds. I have never had to use an epi thus far. Those times when I needed one and was constantly passing out, no one knew what was wrong with me. Therefore, no one even thought of anaphylaxis and giving me epinephrin. It is actually amazing that I survived all those attacks -- my bp would actually go so low that if I stood up I would pass out. They told me that the blood pressure was too low and that there was no oxygen getting to my brain! Wow, pretty scary! I figure that I have a pretty great guardian angel out there, because I survived YEARS of that until they diagnosed me.
Hi, I carry 2 Epis and am very concerned about using them as the Epi is contrindicated in carcinoid patients. So, unless it is really necessary, I'm to avoid it. Dexameth and prednisone get me out of most attacks with Benedryl.
patersonic--- I checked my records, and yes whenever I have had to go to the ER for an anaphlatic event (four times, fortunately not since 2003), my blood pressure was excessively LOW.
of course i (we) have a low blood pressure normally due to the mastocytosis (i believe that is why, anyway), so a normal of 110 over 70 dropped to 84 over 40, 78 over 55, 75 over 44, and 74 over
48 according to my records..
hope this is helpful to you.
best.
Nitric oxide also regulates body temperature along with the histamine system.... so I've been looking into that; I'm still trying to process all that research.
Wow so ten minutes to work for the atarax, that is quick, but is it quick enough if the situation is worsening by the minute?
Deb my goodness, that must have been horrendous going through years of shocking without knowing what it was.
Someone pointed out to me recently that if your breathing is becoming compromised if you can blow air from your mouth onto the palm of your hand NOT to administer epi. Makes sense. It's just the shocks that don't involve airway constriction are what puzzles me.
Another person also told me to carry an epi-junior, I think this is good advice as if my BP is not low a small dose of epinephrine may stop me dropping without having too greater impact on my heart.
The last two nights the inside of my hands are scarlet and last night my feet slightly swollen and red. It's happened before, I don't get that worried about that as the antihistamines keep it at bay with only mild itching on those areas.... I just get them cool really quick and that helps. I mention this as what you referred to Gil with those areas swelling. It signals to me that everything is quiet active and if I weren't on any meds there's a high probability of AX.
Deb my goodness, that must have been horrendous going through years of shocking without knowing what it was.
-patersonic
LOL. Just imagine being in the ER in full blown anaphylaxis with no one (including you) realizing it and all the stupid nurses want you to keep doing is to stand up so they can get a blood pressure on you while standing. Even though, you keep telling them (or shall I say mumbling to them since you can barely talk), "I will pass out if I stand out." Hmmmm....how many times must one pass out to prove them idiots? Sounds like a joke huh? Only problem is that there is no punchline! Haa
Yet another reason that I started this forum: to prevent that from happening to others. Education and knowledge is what it is all about....We are so fortunate to be able to help each other learn more about how to help ourselves. 
This Epi-pen question is a MARVELLOUS subject for I too have my "issues" with it! Here in Brazil the government has prohibited the making of it. Why? Who KNOWS?! Beurocracy usually has no rhyme or reason to it. Anyway, last year I asked Dr. Escribano for his protocols. The CTscan that I had done earlier in the year caused a SEVERE reaction even though I was premedicated according to the typical anti-allergy protocols. They were not the specific medications adapted to masto patients so they didn't hold me and my pressure went to 220/110 and I immediately lost full consciousness! Freaked my doctors out! Then 20 minutes after they woke me up, I went into the prolonged syncope for 3 hours straight. Freaked the entire hospital staff out!!! (they hospitalize me now to do these exams!) So, after that really fun situation and after we got my urine histamine tests results back that were through the roof and up in the upper stratusphere, I wrote to Dr. Escribano for a copy of his protocols for I had heard through the grapevine that this were the best - Dr. Castells even had some input in them. Well, after they worked like a breeze on me the next time around, I wrote back to tell him and thank him for the blessing that his work was. Well, he had the bright idea of asking me to translate them into Portuguese, which I did attempt it, but my translation probably put him on the floor laughing so he must have decided to do it himself or get someone else to. However, in the process of translating them I came across specific challenges that we face here in Brazil due to the idiotic government decision to prohibit the manufacture of these autoinjectors. We can import them but it costs us over $250 US dollars! On a Brazilian income that's a month's salary for a poor person and a big chunck of moola for the average bloke. So, the MAJORITY of us must do without! And being that it is a tropical country, bees are a way of life. My husband just had to have a hornets nest removed from the roof of out house and we are always checking about the roof and ceramic tiles to see if there are any hidden nests being formed.
Anyway, the REMA protocols that Dr. Escribano translated into Portuguese are more explicit than the English or Spanish version for he realized that without the EPI was are in more danger here. He also knows that Brazilian doctors are totally unaware of this disease and that is mainly due to the fact that there is no research into mast cells being done here and there are no research centers for allergic diseases in the country. These two activities amongst doctors within a country help to increase awareness in the medical community itself. Dr. Castells told me that the problem is NOT just that doctors don't understand the disease, they don't understand MAST CELLS themselves!
Anyway, in the Portuguese REMA protocols, Dr. Escribano gives instructions for how and when to use the EPI. His intructions say:
E.1. – No caso de o doente ser adulto, administrar-se-á imediatamente uma ampola auto-injectável de ADRENALINA (Adreject 0,3mL) ou adrenalina a 1/1000 - 0,3 a 0,5mL – por via INTRAMUSCULAR, pelo que todos os doentes, e algum membro da família, deverão ser instruídos previamente. As ampolas auto-injectáveis deverão renovar-se tendo em conta a validade do medicamento.
No caso de reacções locais ou reacções sistémicas sem colapso vascular, usar-se-ão antihistamínicos H1 [explo.: Polaramine® (maleato de dexclofeniramina) 6mg, por via oral] e H2 [ranitidina 300mg, por via oral], juntamente com prednisona 1 mg/kg de peso .
TRANSLATION:
In the case of the patient is an adult, administer immediately on auto-inject ampole of Adrenaline, which is another name for epinephrine -(Adreject 0.3mL) or adrenalina to 1/1000 - 0.3 to 0.5mL by way of intra-muscular injection. The patient and at least one family member should be given previous instruction. The auto-injectable ampoles should be renewed keeping in mind the validity date of the medication.
In the case of local reactions or systemic reactions without vascular colapse, use the H1 antihistamined (ex: Polaramine - maleato of dexclorfeniramine) 6mg orally and H2 ( Ranitidine 300mg, orally) together with Prednisone 1mg/ for each kilo of weight.
Now, those are only PART of the instructions and I will put the second part here:
** NOTA IMPORTANTE: A adrenalina só deverá ser usada em doentes com quadro sistémico e hipotensão severa, NUNCA tratando-se de reacções locais sem alterações da tensão arterial.
- Os doentes com antecedentes de reacções leves/moderadas por picaduras de insectos deverão levar consigo em todo o momento: prednisona, ranitidina, maleato de dexclorfeniramina (Polaramine®).
Em caso de picadura deverão efectuar o seguinte tratamento:
- Prednisona 1 mg por Kg de peso, por via oral;
- Dexclorfeniramina (Polaramine) de 2mg: 3 comprimidos por via oral;
- Ranitidina de 150 mg: 1 comprimido por via oral;
É conveniente, nestes casos, que o doente se desloque até ao hospital, para a realização da determinação dos níveis de triptase total em soro.
TRANSLATION
** IMPORTANT NOTICE: Adrenaline should only be given to patients with a systemic event and severe hypotension, NEVER treating local reactions without arterial tension alterations.
- Patients with a history of prior light to moderate reactions by insect stings should carry with them at all times: Prednisone, Ranitidine, maleato of dexclorfeniramina (Polaramine).
- In case of insect sting the following treatment should be given:
- Prednisone 1mg per Kilo of weight, orally.
- Polaramine of 2mg, 3 pills, orally,
- Ranitidine of 150 mg, 1 pill, orally.
It is important, in these cases that the patient be taken to the hospital, and for the testing of the levels of total serum tryptase.
OK, now having said that, if you will notice, these instructions specify when the epi is needed. Dr. Escribano had to give clearcut instruction as to this situation for I had informed him that I had asked all of my doctors about this and what to do in case of a big event. NOT ONE OF THEM HAD A CLUE!! It is typical here amongst patients who are allergic just to get to the hospital quick, there is none of the instruction regarding allergies that you will find going on in the States. I don't know if this is because the kids are not so horrendously allergic or if there is just not as much peanut and similar allergies going on down here or what, but there is a general unawareness by the society as to allergies and what must be done and none of my doctors gave me instructions as to what to do in an attack other than get myself quick to the hospital. I figured that this lack of awareness on the part of the patient is because it must be on the part of the doctors themselves. Well, after alerting this situation to Dr Escribano, he wrote out these specific instructions in order to raise the awareness amongst doctors as to what to do and hopefully this would trickle down to the patients.
Yet, in the noting of this, that important notice he put up there as to the the use of Epinephrine stands for ANY attack because the Wasp sting is the most dangerous and life threatening situation we can go through. It's been recorded time and again cases of death from bee stings and so in taking this as the worst case scenario, we can adapt it to our day-to-day situations and use it as a guide. This is what I've had to do. I've finally got an epi-pen, but because I get hypertensive in a crisis, I hesitate to use it also because of my aneurysm. I must be extra careful and cautious which is why I didn't use it the other night when I about exploded from triggering on Ginger. I've got to be in an either/or situation for me to possibly use that epi. So until that happens, it's going to sit there mainly in case of a bee sting! However, I have a continual supply of prednisone, Ranitidine 300mg and Allegra 180mg. I don't use the polaramine, allegra works very well on me and so I use it as my medicine of choice. So far I've only had to hit in once with the prednisone and twice I've doubled up with Allegra and Ranitidine at the same time. Otherwise the Allegra does fine alone.
Yet, this is one thing that does not apply ONLY to bee stings, but applies to ALL of the things that trigger an attack! I've not been stung by a bee, and I hope I never do for I don't want to see how well the protocols work! However, I'm ready! And I've used this very method of dealing with my attacks, big and small, each time I have one and I go through an average of ONE A WEEK! So, I think that if you can get accustomed to detecting the severity of the attack in that you begin taking a portable BP cuff and perhaps regularly measureing your pressure (even though it's not an easy thing when your world is exploding around you, and seeing what you are feeling and correspond it to what the monitor is telling you then when you have one of those huge events then you'll automatically be able to say, pressure is crashing I need the EPI!!! This is the only thing I can figure that will help to identify what exactly is going on and how to respond to it.
If anyone has questions, I can help you with the theory, but I've never used it myself.
Now, as to the Carcinoid Syndrome. Yes, epinephrine will take a carcinoid patient and put them into a carcinoid crisis and the danger for anyone who is systemic is that you've FIRST got to RULE OUT the carcinoid before ever using any epinephrine. Epinephrine can cause a cardiac arrest on a carcinoid patiente and they need other meds to revert their crisis. However, having ruled out the carcinoid, epinephrine will do the very opposite and is a LIFE SAVER for the masto patients. The reason for this is that the flushing and symptoms come from other hormones. The masto patient has the mast cell, basophil or eosinophil as the source for his histamine release whereas the carcinoid has neuroendocrine tissue cells which are releasing hormones in high quantities. Even though the two diseases produce almost identical symptoms, it's what is causing the symptoms that is important. This is why those of us who are systemic without cutaneous involvement undergo two individual investigations in the process of trying to get a diagnosis. Again, once the carcinoid has been RULED OUT, then epinephrine is no longer a threat!
Well, sorry for the length of this! Whew! I'm tired! I hope it helps to clear up some of the questions. I only wish that Dr. Escribano had put these instructions on to the English version.
Lisa
I say this as I'm now fairly sure (as sure as one can be with this stuff) that the zantac (ranitidine) put me into a critical anaphylactic shock. I upped the dose given the amount of GI issues + pain I had and whacko ... ambulance.... ER overnight.
I would NEVER take all of the protocols that REMA suggest, although I'm very appreciative that this knowledge is out there and has held many in good steed through procedures etc.
I'm more interested in to hear of people's own personal use and concern for using epinephrine when there is no airway constriction, or classical markers ie. urticaria, swelling that many of us do not present with when shocking.
Hey Patersonic,
I've been thinking more about this...
I have symptoms pretty much on a daily basis, but I'm usually able to bring them under control with antihistamines. However... once in a while I'm not, and I find myself waiting it out for hours. The drug regimen I'm on (Zyrtec/Claritin/Zantac) has made a BIG difference with my skin symptoms, so my "attacks" have turned primarily into dizziness/vomiting/diarrhea instead of head-to-toe hives. If I didn't know I have a mast cell disorder I might interpret my symptoms as "food poisoning."
I'm often home alone with my two small children (ages 4 and 1)... I can't afford to pass out! I've come close many times, but it really helps to lay down. There have been nights when I've been on the couch (or even the floor) with an epi pen and the phone.
I guess I can understand why people like Dr. Akin and Dr. Escribano say to wait... but if you don't have a heart problem or carcinoid syndrome, is there really any harm in giving yourself an epi? I don't think so. If I'm vomiting uncontrollably, taking some pills is not going to work! The only options (as far as I see) are liquid Benadryl, chewable Pepcid, and if that doesn't work... epi pen. (Of course... there is a question about how long it should take for those medicines to work... and I don't really know! I'd love some advice.)
Anyway... as you noted, we all have unique situations.
Pat, I AGREE with you, we are all so different and those protocols are meant to be adjusted because they are a GUIDE. For example, I don't take the polaramine, I take Allegra instead. When, however, I'm getting ready to go into surgery or something big, cause the SAME instructions are giving for sugery and contrast injection, Then I'll take Polaramine but this is ON TOP of my daily medications, not instead of.
What these instructions are, is nothing more than a guide that needs to be interpreted by your doctors. What they are saying is:
H1 Blocker + H2 Blocker + Prednisone = Relief from ACUTE symptoms.
If there is sign of Blood Pressure drop ADD EPINEPHRINE
This is how the REMA protocols are meant to be used, NOT by the exact rule of thumb. And if you are going into surgery, Dr. Castells added to these instructions that Singulair must be added. That's all, Pat. They're a guide for our doctors, and if you are allergic to Zantac then you most definitely should NOT use it and you're showing how wise you are in knowing your body and being sensitive to it!
And I can assure you, if I were like you are Heather in that you're trashed and on the floor or couch you bet I'd have that epi in my hand too!!
What's so very hard for us is the fact that, if I'm correct in this assumption I won't be surprised, is that NONE OF US has had any FORMAL INSTRUCTION from our doctors as to what exactly acute symptoms are! How are we supposed to know if what we are going through is as bad and we think it is? How do we know that we aren't just OVERREACTING and that really it's not quite all that bad afterall? We're not doctors! We're not formally trained in medicine! We've not even seen anybody else going through this to even have a clue as to how bad we are in comparrison to another person!!!!! It's not fair to us to expect us to make a true medical decision about these things if we have nothing to go by in order to help us make a decision that ONLY a doctor should have to make! It's a great deal of responsibility in our hands and we're not even medically capable of making those calls!!!!
This is what scares us! Cause none of us are fools! Like I said, I'm scared stiff about using the EPI for in my case with my aneurysm is this something that I should? Yet, the worst thing about it for me is that I get hypertensive in a crisis. This puts pressure on my aorta and so it could blow during an attack. We need to bring my pressure down and from having talked with a few who are hypertensive they say their pressure comes right down. But when my own doctors are afraid to use it I don't dare on my own, so I feel that I've got to wait it out and pray that my antihistamines and medication to reduce my pressure will do the trick. But here, get this for fun, the medication to bring down my pressure quickly triggers me and I end up going back into anaphylaxis when my pressure is brought down so quickly! So I end up bringing my pressure down, but I increase the mediator release going on because I've triggered again, one right on top of the other! Double Fun!!
Yet I think Pat and Heather that what you both are discribing are ACUTE REACTIONS and when those acute reactions are going on the pills take too long to take affect. They take about 15 minutes to get into the system. You need the Epi! It would be good for you to sit down with a doctor whom you can trust and who is listening to you and tell them these fears and concerns and ask for instructions about how and when. Then you will feel less insecure about it.
Hello... Yes we are all unique. apparently I have the hypertensive variant of this disease. When I am flaring my BP goes through the roof, literally to stroke level. When the docs in my local ER first began treating me, they would freak out and hesitate in giving me the epi shots because of my BP being so high. This WAS until they learned, that I'm just downright weird! When I am given the Epi while in a major flare, my BP drops and stabilizes. For example. My BP was 220/135... Seriously! I had a few hives but this was a major bone pain flare for me. My regular meds didn't help and I'd had all I could handle so It was off the the ER for my medication cocktail. Within minutes of being administered the Epi my BP began to come down. The docs don't even hesitate now... even before tey access my port, they are shooting me in the back of the arm with Epi.
Basically, what I was told is... If I have swelling in my face/head and neck, the bone pain becomes unbearable, and or I get itchy scratchy feeling in my throat... use the epi-pen and go straight to the ER. I was told not to wait until i felt like passing out because the purpose of the epi is to stop the Anaphylaxis in it's tracks, and has a better chance if you're not in full blown Anaphylactic Shock.
Alot of people wait for the shock part of the Anaphylaxis and that can be way too late.
You know you're right regarding the use of the epi, that it's meant to prevent shock, that we should use it before we get to that point of dropping. It's just interesting that many of us seem to be so hesitant about using it, well I am, and maybe it's because my fear and anxiety increase in a shocking attack and that I cannot make sense of what to do at the time because so much is already happening. But you are right.
Heather-star when you mentioned "food-poisoning" that's curious as how I described the last doozy of an attack was that I felt "poisoned, toxic". It is important for me to read others that go to bed with the phone and epi beside them, I don't feel like such a loop now regarding this because it is damn scary.
Lisa, yes hopefully when I get better medical care I'll be able to discuss the use of the epi with a professional who gives a shit and this may help for me to have a better understanding of when to use it and allay some of my anxieties.
This summer I was SURE I had food poisoning... so was the doctor I saw at the urgent care clinic. You know what the treatment is? <drumroll please> Antihistamines! It took a few hours for the nausea to build up... no rapid onset... but once I started throwing up there was nothing I could do. "Poisoning" is a good description.
My attack last month was very similar, but there were a few things that made me realize it probably wasn't food poisoning:
1. I had eaten a lot of histamine-containing and -releasing foods for dinner... gluten-free macaroni and cheese, two bananas, and a large cup of hot chocolate
2. I felt perfectly normal the next day... no need for a bland diet (my husband had food poisoning from some bad fish a couple of months ago... he was eating rice pudding for a week)
3. Two days after the attack my period arrived (hormonal changes are a big trigger for me)
I wanted to ask my allergist about this today, but it was a bad appointment. Despite the INCREASE in nausea/vomiting/dizziness he wanted to decrease my H2 antihistamines. What?!?! It's not that I want to be taking a lot of pills, but geez... I sent another e-mail to Dr. Castells. She might be too busy personally, but I'm really hoping to see *somebody* who knows what they're doing.
Just out of curiosity, does Dr. Castells respond quickly to your email questions? I think it is helpful to know what the style of various doctors are so that if we end up with one of them, we won't have incorrect expectations.
Well on a good note, I just had my first appt with Dr Castells yesterday afternoon. I even took the laptop with so I could show her pictures! She's awesome.
