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Experience with Epi Pen?

May I have everyone's suggestions for and experiences with an Epi-Pen?  I have talked with the doctor and will again when I get my first injection of Xolair a week from today, but I would like to hear how all of you who have had the need for one have managed it.  I have taken a couple of one-day First Aid/CPR courses that briefly went over how to use one for someone else some years ago so am slightly familiar with how it works.

Any and all thoughts appreciated! 

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  • Melanie Carver

    Hi Lisa,

    I've used epinephrine auto-injectors on myself and my son. 

    There are now 4 types available, and how you use each one is slightly different. More information here:  

    That blog is on our sister site, Kids With Food Allergies (KFA). It includes information on discounts and coupons.

    This is another anaphylaxis resource from the KFA website that I hope you find helpful:  – be sure to watch the video on this page.

    And even though that resource talks about "your child", all the information pertains to adults as well.

    As for anaphylaxis itself – have you ever experienced it? It can be different each time and for each person. For myself, I know it affects my judgment, and so I've had to ensure that my husband is trained on how to recognize the symptoms and how to inject my outer thigh himself. This is because in the past, I have been lightheaded and sort of refused to do it on my own. So I've given him advance permission to follow through on treatment on me if I don't seem myself and I have signs of anaphylaxis.  However, my son's experience has been different than mine. He has been able to recognize the symptoms immediately and tells the people he is with – "I'm having anaphylaxis. I need my epinephrine," and then injects himself.

    (My son is also on a biologic and has not had anaphylaxis to it. He is allergic to several foods.)

  • LK

    Melanie,  Thank you for the links.  Will definitely read them and watch the videos. 

    No, I have never had anaphylaxis myself.  Had no idea it would have such a wide range of affects on people.  Will have to show DH how to administer the epinephrine.

    Thank you! 

  • LK

    Do you keep the Epi-Pens by your bed at nighttime?  I keep one of my asthma inhalers on my nightstand and was wondering if that is advisable to do with this.

  • Melanie Carver

    I have multiple sets that we've accumulated over time. There is always a pair in my purse, and my purse gets stored in the hallway (which is right near my bedroom). 

    I also have a pair in my kitchen and a pair downstairs.

    My purse (and the epinephrine inside of it) always goes with me if I'm leaving the house.

  • Pljohns

    A few years ago, my old doc told me to start carrying one since I’d had an anaphylactic  reaction to asthma meds (thankfully while I was in a doctors office at the time).  I’ve not had to use one since I began carrying it but they told me I was at increased risk of reactions to meds.  I carry one in my purse and one stays in the bathroom counter where DH knows where it is.  I never leave home without th one in my purse (end up carryng my purse so I had my neb too).  I had always just had the brand epi-injector and now the generic brand of the same one.  HOpe I don’t have to use it anytime soon.

  • K8sMom2002

    Lisa, one of the most useful pieces of advice I got was to read up on which is another resource on Kids With Food Allergies. 

    Could you ask your doctor when the most likely window of time that you might experience a reaction to the Xolair? I understand that it's a very rare possibility, but you definitely want to be prepared. It may be that your doctor advises that you only need to carry them with you to get your shots.

    As far as the day to day management of epinephrine auto-injectors, the thing that took us the longest to get used to it was where/how to carry it and making sure it stayed within the correct temperature range.  The KFA blog  says this:

    Auto-injector labeling instructs storage at at room temperatures (68-77 degrees Fahrenheit, or 20-25 degrees Celsius). Trips are allowed between 59 to 86 degrees F.

    DD's doctor switched her to Auvi-Q this last year, and we got ours delivered to our house. When the pharmacy that shipped them called to ask if I had any questions,  I asked, "How did you keep them at a safe temp?"

    He instructed me to keep them in a thermal foil lined bag (think one of those lunch bags or insulated shopping bag) and to keep a gel pack in there to absorb the heat — not cooled or heated. He said you could use a regular hot/cold gel pack that you'd put on an aching joint. Packed that way, as long as they weren't staying in the direct sun for an extended period of time, he said, they should be okay.

    So I took a small bag that had a caribiner clip on it, raided an old insulated shopping bag of its foil lining, and lined the little bag. Now DD has a way to carry her epinephrine even in the hot summer days. 

    DD always keeps hers with her — they were in her purse by her bed, but now that she has the smaller versions, she keeps them in a clutch wallet unless she will be outside for any extended period. If that's the case, she puts them in the little pouch with the foil lining.

    But regardless of which brand she carries, she carries two with her at all times. 

    We saw the wisdom of that when she had an allergic reaction that took three epinephrine shots to turn around. So now we never split them up.

  • Shea

    I now keep my epipens in an allergy bag in my backpack-purse (along with my allergy action plan, benadryl, extra inhaler, and extra prednisone). I have had to use my epipen myself 3 times (and once I had to use both my epipens (I carry two) and the most recent time the ambulance people had to give me a third epipen–  it was not until I got to the hospital that the anaphlaxis turned around after a steroid injection and breathing treatments galore).

    Usually it is my food allergies–I had a reaction once in the hospital to a medication, and once I had anaphlaxis to second-hand cat dander.

    It usually comes really swift, my face gets red, hot, I feel panic inside, and I can feel my throat closing ( I am the type of person that gets really calm in emergency situations and I just moves to logic, so I immediately tell people to call 911 I am having an anaphlactic allergic reaction, excuse myself to the bathroom or more private area with someone, inject my epipen (mine you have to hold in thigh for 10 seconds) then I take benadryl if I can, and my extra prednisone, and use inhalers as needed (although they usually dont help) until ambulance arrives. In my yourh I had allergic reactions that I now realize bordered anaphlaxis but at tbe time had no epipen and just took a bunch of benadryl because I didnt know better–but they were never as severe as the past 3-4 times which I know would have been deadly if I had not had the epipens with me.

    I have always had to do the epipen shot myself (at least fir the for the first shot). My last experience was the worst– I really thought I was going to die and then the epipens made my anxiety sky rocket… I was just crying that I didnt want to die, I wanted to be with my son, and then I couldnt talk and just struggled to take each breathe so that I wouldnt pass out and nothing was giving me relief, even when the emergency personnel were there I wasnt getting better at all–so that really scared me because the times before that the epipen usually gave me some relief. 

    Luckily I have never had to administer epipen jr to my son (so far his reactions have been mild) but I do carry it in his allergy bag everywhere we go, along with childrens benadryl and his allergy sction plan. I never leave our bags in the car. 

    We both also have medic alert bracelets. 

    I want to get life alert or a similar thing next so that if we are alone we can push a button to be connected to trained people and have gps. 

  • LK

    Thanks for all the information!!

    Cynthia,  The doctor and the manufacturer of Xolair both say that you can have a reaction to it at any time;  right after getting the injection, a few minutes or hours or days later and it can happen after the first injection or after you have had many injections.  Those are the main reasons it has taken me so long to agree with my doctor to start on Xolair.  Used to figure I had enough to deal with just with asthma and didn't want to deal with anaphylaxis, too.  Now need to get my asthma more under control so have agreed to start the Xolair.

    When I was first diagnosed with asthma, I had my inhaler within arm's reach at all times and I have the feeling that is how I am going to be with the Epi-Pen since I don't know what my symptoms for anaphylaxis are. 

  • LK

    I've been told to keep the two Epi-Pens together, also, in case I need to use the second one if the first doesn't do the trick.  My Rx refill says it needs authorization, so I'll ask my doctor for a spare pair to keep in my bedroom. 

    I really appreciate all the useful stories of how you all have handled the situations of using your pens.  Thank you!

  • K8sMom2002

    Lisa, definitely check out the different money-saving options and ask your doc to fill out any necessary paperwork!

    Shea, that sounds super scary! It sounds like you kept a cool head despite some of the worst symptoms and got help right away. 

    One thing our doc has warned us about: if DD is having a reaction, we should give her the injection right where she is and not let her get up. Part of anaphylaxis can be a sudden drop in blood pressure and you can go into shock. Moving from one place to another, our doc says, especially getting up, can aggravate that. 

    Since you can give an injection through even jeans, we've been told to just inject through clothes. That means we don't have to worry about embarrassing DD by taking off her pants. 

    Could you talk to your docs and see what they say about that? Every doc is different, and your doc may have a different approach or advice. 

  • LK

    Thanks, Cynthia,will definitely ask my doc about those things!

    His office was great about getting all the forms filled out and worked with my insurance company.  The doctor's office gave me a brochure on the Xolair and had me go online to fill out information for a Xolair card.   

  • LK

    Shea,  Glad you keep your head in those kinds of situations!!  Thanks for sharing this with me!

  • Megan Roberts

    Shea that sounds so scary. Glad you made it through that situation and hope you don't experience it again. 

    LK I am guessing it's a very low chance you will actually have a reaction to the xolair but the prescription is to cover that remote possibility. Hopefully you will never need to use it! (, the frequency of anaphylaxis from xolair is less than 0.1%.) But it's always smart to be informed and prepared, so good for you for doing your homework and stocking up on two sets of medication and tips from your community.

    I no longer have to carry an epinephrine auto-injector but did as a teen, and had to self inject a handful of times as I was away from parents or family or other adults who knew what to do (I never had an action plan, things just weren't that organized back then I don't think). I was much more scared of the rapid progression of my reaction than the use of a needle on myself so I couldn't wait to use it when needed. The needle itself is short and not very intimidating. 

    I also did know within a few minutes of ingesting my allergen that I was having a reaction after the first time. Sometimes less than that. So it made self-administering the epinephrine possible because I was still mostly functional. 

    I did discover I had been carrying around expired medications a few times (luckily not when I needed to use it). I didn't have a system for keeping track of that. But I was also a teenager, so that's not very surprising. I also didn't think about keeping it in the acceptable temperature range. Both important details to stay on top of. It sounds like you will do a much better job of managing your meds! 

    Hope the xolair works great for you, with none of the side effects that have made you hesitant about trying it in the first place.

  • LK

    Thank you, Megan!

    Yes, the incidence is very low that I would have a reaction but I feel so much more prepared after reading how so many of you have dealt with anaphylaxis and using the Epi-Pen.

  • Shea

    I did try xolair for a year and never had anaphlaxis to it. I know that anaphlaxis and allergies is case by case but I just thought Id let you know. The office I had it injected did monitor me for 30 or 45 minutes after each injection (and longer for the first).

    It is a great idea to be educated and ask like you did so that you know what to do and have a plan of action.

    And yes, as others said, it is probably better to inject the epipen right where you are at, and through the jeans, but when I had my last reaction it was the easiest and quickest thing to do at the time to get up–my family has never handled me having an allergic reaction that severe, and I wanted 911 called asap. Plus it would be easier if I ended up having to throw up to be in a bathroom–as that was common in tbe past reactions. I think my family would be better at helping with it now–theyd know this is a big deal and call, whereas before it was like, here is some benadryl. Im glad I didnt freak out in the middle of the restaurant and was at least in the bathroom while panicking–although I am sure the whole restaurant heard me even from there and with the ambulance and emergency people there–Lol I will never go back to that restaurant. But I did email them that they should mention their chicken (not even chicken salad–just chicken) has nuts in it in the menu description. (I have a hard time having places check when it is busy, and fancy, and the people I am with are in a rush, but I will not make that mistake again!). Always gotta check even when it seems like a safe food choice. 

  • Melissa G

    Bekah has her epi's in her backpack, that is attached to her 24/7. She has a feeding tube, her backpack carries her feeding tube and hydration in it. 

    Josh, has a sling backpack to carry his epi's, and when we are home, the bag hangs on our foyer banister. 

  • Brenda Silvia-Torma

    I keep two in my purse with me at all times, and then we also have two in our kitchen. My DH has bee sting allergies and he keeps his epi with him when he goes golfing and on other outings. When we go to Lake Anna to visit relatives (very remote location, with not much medical assistance), I usually carry three pairs of epi. I have never had to use them but knowing that they are there, ready to go, is reassuring. 

  • Pljohns

    Mine stays in my purse all the time.  I have the other one in my bedside drawer at home.  Thankfully I've never had to use them but the pulmo insists that I carry them.

  • K8sMom2002

    It's so good to hear that everyone keeps their epinephrine auto-injectors close by! 

    Summer is coming — along with summer camps. We're going to have to look at how DD takes her inhaler and her epinephrine auto-injectors with her.

  • LK

    Sorry!  Guess I have been forgetting to update this thread!    

    Yes, and our insurance covered it.  Thank you for asking, Melissa!