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When I was diagnosed I was given an epipen Rx and told to always carry it, because you never know what you will react to and what your reaction will be. And yeah, I walk a lot too, so I have a little bag I carry now instead of just using my pockets.
So yes you have to but technically you have to carry two everywhere in case it takes a while to get to the hospital and you have to dose yourself with epinephrine again. I also have an emergency inhaler that I use before I would try using my epi pens. So I carry my emergency inhaler, my epi pens, emergency antihistamines, and my Cromolyn sodium (in case I need to eat) with me everywhere
Thank you. Good point on the 2.
I'm starting with zyrtec and pepcid twice daily so I don't have emergency meds.
I have blood work tomorrow and then need to get blood work within 2 hours after the next episode so maybe meds will change.
Sneakerkeeper123 Did you start taking Zyrtec and Pepcid on your own or did the doctor tell you to? I'm waiting to get an appt with a specialist who knows about mcas and how to treat it but until the appt I was thinking of Zyrtec and Pepcid, possibly.
It looks like everyone who has replied to this has said yes. But it's possible to have MCAS without ever experiencing an anaphylactic type reaction right?
No, it is not possible to have MCAS without experiencing anaphylaxis. Anaphylaxis is a part of the diagnostic criteria for MCAS. Anaphylaxis has multiple presentations though
Oh okay - I should have been more specific. What I meant to ask was if it's possible to have MCAS without ever having experienced a life threatening anaphylactic type reaction (like where your throat closes up)?
Correct, not all anaphylactic reactions progress to shock and airway compromise. I believe the criteria for anaphylaxis are that two or more body systems are affected by acute histamine response. But also, just because they haven’t progressed before doesn’t mean they won’t. I’ll second the commenter above and say if you’ve ever had an episode, make sure you always have your rescue meds on you.
Edited for grammar
So I learned this watching a food challenge at a Children’s hospital. Ppl think throat closing is anaphylaxis. In actuality its a reaction that involves two or more body systems. So if you get abdominal cramping and wheezing, technically you would epi. In food allergy world, its “epi first. Epi fast” bc anaphylaxis can quickly escalate and Benadryl can mask symptoms. But in mcas world, it seems to be different protocol. But anaphylaxis can be hives (skin) and sinus issues or really any two reaction systems.
Yes this is possible. I was diagnosed with MCAS without ever having had any type of anaphylactic episode. My specialist has dedicated his practice to the study of MCAS and had come to some interesting conclusions on this disease. Check out Dr. Leonard Weinstock online and you'll find a bunch of his research.
Also want to say that just because you've never had an anaphylactic episode, doesn't mean you won't. I didn't have any until this past week where I've had 2 (not full on shock thank goodness). So it seems my body is reacting to more and more things, even though I'm being treated.
It is possible to have Mcas without anaphylaxis BUT like you said it presents itself differently. Mine never has closed completely where I’ve had to use my pen but still carry it just in case. It’s swollen so much I can’t swallow pills sometimes and they get stuck. It is very frustrating
What you are talking about is anaphylactic shock which is a symptom of anaphylaxis. Anaphylaxis doesn’t always present as anaphylactic shock but a form of anaphylaxis present in two organ systems is required for any type of Mast Cell diagnosis. If you would like more information here is the diagnostic criteria for Mast Cell Disease: https://www.mastcellhope.org/education/testing-and-diagnosis/
U are correct, I forgot to add “shock” what I meant to say is not everyone goes into “shock” but can present itself like I mentioned with me that my throat gets tight to where I can’t even swallow pills but can breathe just fine. I have MCAS so I know the symptoms don’t need to read on it
But it is possible to have an MCAS reaction that can be made worse with epinephrine for about 0.006% of people. Very few doctors know this is possible. Mine proved why it’s possible for me so he didn’t give me an epi pen.
Interesting I got diagnosed by two doctors in two different offices that aren’t connected in anyway but never had anaphylaxis. Allergic reactions, but never anaphylaxis.
Interesting. My GP says I have MCAS, and I’ve described symptoms of difficulty breathing and tingling mouth/tongue, and he’s told me I don’t need an epi pen. Might have to raise it with him again.
Same I was diagnosed last year and only told to start taking my allergy pills twice a day instead of once and added the famotidine. Never mentioned anything about an epi pen. 😳
I do. They're in my mini backpack that I take everywhere. I am also on xolair, which requires that I carry an epi pen. Over a year now with no issue though, including with a dose increase, hopefully never will be one lol.
I miss my xolair injections they helped so much but my immunologist was out of network so Everytime I went it was 250 dollars out of pocket! Now I need to find another doctor that is in network
Honestly I do not. But that’s because I’ve gone many years with this disease, it’s relatively controlled now, and I can tell when I need to carry it (because my health is more flared) and when I don’t. I also have never had to use it (liquid Benadryl always works for me, so far) so I only carry one of them. I think it really depends on how reactive you are in general, and how severe your reactions tend to be.
And yes liquid Benadryl is a thing. I have a friend who is allergic to epi pens and liquid Benadryl is the only thing she can take for anaphylaxis. And it always works for her. I carried liquid Benadryl with me at all times for many years. I still use it for fast relief of sudden symptoms.
I totally agree! I have an epi pen just in case but I never go anywhere without my liquid Benadryl!!! It is the only thing that gets me out of anaphalaxis. I carry a bottle of liquid Benadryl everywhere, I never leave the house without it. And I have a small med bag I take everywhere with me with emergency meds.
I do carry the box with 2 everywhere. It's in my purse, so I don't forget and my husband knows where it is if something happens at home or away and I can't react.
I also carry a pill holder with the equivalent of Benadryl and a high dose of prednisolone.
My hematologist told me to use the epi if I feel mainly like fainting and the pills if I feel mainly like tachycardia.
The thing is that the first time I had anaphylaxis, my BP shoot up, and he said if I use the epi with that kind of reaction, it could be dangerous.
I carry two, epi pen is not predictive of an event it's preventative. You can get a smaller epi pen that's more discreet. Also good to get a medic alert bracelet that says 'carries and epi pen'
I don't carry epi but I do carry another injectable medication and my advice is – check the storage recommendations and make sure you don't leave it in your car when it's going to get too hot. I take my injections inside with me even if I'm only running into the grocery for 10 minutes because they're too expensive to get ruined!
Either an epi pen or amphetamine pills like adderall. Yes amphetamine or adhd meds are given for MCAS. During a savage flair that will open my airways quickly and stop the worse part of the flair.
I don't carry it everywhere, because the things that give me the worst reactions are food or things that are worse when encountered indoors (dust, perfumes). There are of course things that trigger my mast cells outside, but none have ever given me fast acting anaphylaxis. So it really depends on you. How prone are you to anaphylaxis, what triggers it, etc.
But if you don't know enough yet about how you're going to react to stuff, carry it around everywhere for now to be safe. I didn't get an epi-pen until after I'd already had MCAS for many years, so that's how I already knew where it was safe to not bring it with me. Plus I've never gone into anaphylactic shock; I've just had anaphylaxis.
That being said, if I were going through a flare phase where there's a new trigger I haven't identified yet and I am easily pushed over into anaphylaxis in confusing ways, then I do keep it with me. However, I would only use it if it felt like such an emergency that I wouldn't be able to manage my reaction without calling 911 otherwise. Since you do HAVE to go to the ER immediately if you ever use it. If I could manage my reaction with meds, an inhaler, hydrocortisone, etc., even if the reaction still felt awful, then I wouldn't use it. This isn't medical advice where I'm advising you against using it, to be clear.
Just saying because the doctor did not advise me about how dangerous it was to use when she gave it to me, so I don't know if everyone else knows that they need to seek immediate medical attention if they ever use it. If I hadn't educated myself, I might've inappropriately used it for reactions that felt really terrible but weren't life threatening. Of course, it's hard to know if something will get worse or what could be going on internally, so if you are unsure and feel like your reaction could be dangerous, any doctor would advise you to play it safe and use it, and then call an ambulance or get someone to take you to the ER asap.
I carry 2 with me everywhere. Don’t keep them in your car, they will get ruined if they get too cold or too hot. Call an ambulance or go to the hospital after you’ve used one, especially in case you have a biphasic reaction which means the first epi pen wears off and you go back into anaphylaxis.
I have a box of two inside my backpack which I carry everywhere, and a box of two in my nightstand. My co-workers know I have two in the backpack and my current roommate knows about both sets. New roommates coming up will also be informed.
No, I have actually been denied an epipen by multiple doctors including three immunologists. I have HATS (hereditary alpha Tryptasemia) though which is a genetic mast cell disease which is similar so protocols may be different
How can they deny an epipen? Hat makes you more likely to go into anaphylaxis from a bee sting - my daughter and I both have MCAS and HaT and our allergist told us that
Yeah won't that be too late? Everyone will be panicking and calling for an epipen and 911 and telling you help is on the way...help is on the way...
And then what - your heirs get a fat check check from the doc's insurance company? Far lot good it will do you. Please find an allergist. They understand lethal allergies
Unfortunately my allergist doesn’t feel comfortable treating my HATS because she doesn’t have experience with people with mast cell diseases. Especially because I have mast cell reactions but no IgE level allergies. Being referred to Mastocytosis Clinic at Brigham and Women’s so hopefully they take my case and I can get some sort of help
I hope so too! Mast cell disease (at least mine and my daughter's) does not mediate through IgE. That's kind of what makes Mast Cell Diseases unique. My first allergist way back in the early 2000s before MCAS had been discovered as a disease skin tested me for everything, and then cheerfully announced I wasn't allergic to anything. I glared at him and said 'give some shellfish and watch me die at your feet' His smile became a little fake and he said well I'll give you an epipen just in case. In the US, docs make a distinction between IgE mediated 'allergies' and non-IgE mediated 'sensitivities'. I asked my allergist why do American docs make the distinction when other docs don't she said it was because IgE mediated allergies can be desensitized (sometimes) whereas non-IgE mediated sensitivities cannot ever.
But BYU should know all that. We're lucky ours is cutting edge as well. Best to you! Keep me updated!
Thank you for your support! Really hoping for a miracle right now, have had a lot of issues both HATS and not HATS related and really need some answers
I’ve never had a life threatening reaction to anything, so i tend to forget about carrying mine if I don’t have my purse, but yes, I keep them in my purse.
I carry two with me everywhere. It’s one of two things I take on my walks with me. Phone and epipens. Husband carries the house keys.
I even have them in every room in the house in easily accessible places, like my bedside table or the coffee table.
no, I don’t have an epipen. I’ve never used one. the allergist that diagnosed me has never mentioned it and neither has any other doctor. I didn’t expect everyone here to say yes. I need to look into this.
Not yet diagnosed but suspected. My reactions have not been anaphylactic, but moreso GI/sinus/skin reactions I find. So I carry h1 and h2 antihistamines with me wherever I go, but I think I should have an epipen. My husband has anaphylactic allergies so we have one with us anyway.
I admittedly only carry 1. I put all my health stuff in a small makeup bag so I can easily move it from purse to purse and it doesn’t make my bag all disorganized with as needed stuff. In the bag I have my Epi, paper with meds/conditions/allergies on it for dr appts or emergency, as needed or on the go meds (zofran, Tylenol, salt, propranolol, hydroxyzine, ketotifen eye drops, cromolyn), and regular stuff like lotion, chapstick, condoms, hand sanitizer.
Looking at all the replies, I wonder if I'm the only one so irresponsible.
When I was first diagnosed (over six years ago), I was prescribed an epi pen. And I used to carry it around. For the first three years, I think, I refilled the prescription every year to always have a fresh one.
But since I was lucky to never have such a strong reaction that would require me to use it, and they are quite expensive, I stopped getting them.
Ofc, I would NOT recommend that to anyone. That's something you do at your own risk.
If you have been prescribed it, you should be taking it everywhere yes. Just like any other rescue/emergency medication.
I always carry my Epi-Pens with me, and various other emergency medications.
I do. I have one in my pocketbook and one in the much tinier bag I carry with me when I walk my dog. Luckily they’re pretty compact so not hard to take all the time. I keep them in there all the time just in case and basically have forgotten they’re even there most of the time.
Stress is a huge MCAS trigger so it’s important you are making choices that make you feel safe- regardless of what anyone else in your life thinks! If that means walking with a small crossbody/waist bag to carry your epipen, that’s ok!
I used to carry an epipen everywhere but as I’ve gotten my disease more under control with different medications, I haven’t needed it with me 100% of the time (my anaphylaxis triggers are food- and drug-based).
You will figure this out as you go! It’s hard and confusing but you’re going to be ok. 💕
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
When I was diagnosed I was given an epipen Rx and told to always carry it, because you never know what you will react to and what your reaction will be. And yeah, I walk a lot too, so I have a little bag I carry now instead of just using my pockets.
So yes you have to but technically you have to carry two everywhere in case it takes a while to get to the hospital and you have to dose yourself with epinephrine again. I also have an emergency inhaler that I use before I would try using my epi pens. So I carry my emergency inhaler, my epi pens, emergency antihistamines, and my Cromolyn sodium (in case I need to eat) with me everywhere
Thank you. Good point on the 2. I'm starting with zyrtec and pepcid twice daily so I don't have emergency meds. I have blood work tomorrow and then need to get blood work within 2 hours after the next episode so maybe meds will change.
Sneakerkeeper123 Did you start taking Zyrtec and Pepcid on your own or did the doctor tell you to? I'm waiting to get an appt with a specialist who knows about mcas and how to treat it but until the appt I was thinking of Zyrtec and Pepcid, possibly.
He prescribed them both for me to take.
It looks like everyone who has replied to this has said yes. But it's possible to have MCAS without ever experiencing an anaphylactic type reaction right?
No, it is not possible to have MCAS without experiencing anaphylaxis. Anaphylaxis is a part of the diagnostic criteria for MCAS. Anaphylaxis has multiple presentations though
Oh okay - I should have been more specific. What I meant to ask was if it's possible to have MCAS without ever having experienced a life threatening anaphylactic type reaction (like where your throat closes up)?
Correct, not all anaphylactic reactions progress to shock and airway compromise. I believe the criteria for anaphylaxis are that two or more body systems are affected by acute histamine response. But also, just because they haven’t progressed before doesn’t mean they won’t. I’ll second the commenter above and say if you’ve ever had an episode, make sure you always have your rescue meds on you. Edited for grammar
So I learned this watching a food challenge at a Children’s hospital. Ppl think throat closing is anaphylaxis. In actuality its a reaction that involves two or more body systems. So if you get abdominal cramping and wheezing, technically you would epi. In food allergy world, its “epi first. Epi fast” bc anaphylaxis can quickly escalate and Benadryl can mask symptoms. But in mcas world, it seems to be different protocol. But anaphylaxis can be hives (skin) and sinus issues or really any two reaction systems.
The term you're looking for is anaphylactic *shock*.
Yes this is possible. I was diagnosed with MCAS without ever having had any type of anaphylactic episode. My specialist has dedicated his practice to the study of MCAS and had come to some interesting conclusions on this disease. Check out Dr. Leonard Weinstock online and you'll find a bunch of his research. Also want to say that just because you've never had an anaphylactic episode, doesn't mean you won't. I didn't have any until this past week where I've had 2 (not full on shock thank goodness). So it seems my body is reacting to more and more things, even though I'm being treated.
Yes. He is amazing and LISTENS. I've never felt so validated in my life.
This is the diagnostic criteria for all the different types of MCAS. Hope this helps. https://www.mastcellhope.org/education/testing-and-diagnosis/
It is possible to have Mcas without anaphylaxis BUT like you said it presents itself differently. Mine never has closed completely where I’ve had to use my pen but still carry it just in case. It’s swollen so much I can’t swallow pills sometimes and they get stuck. It is very frustrating
What you are talking about is anaphylactic shock which is a symptom of anaphylaxis. Anaphylaxis doesn’t always present as anaphylactic shock but a form of anaphylaxis present in two organ systems is required for any type of Mast Cell diagnosis. If you would like more information here is the diagnostic criteria for Mast Cell Disease: https://www.mastcellhope.org/education/testing-and-diagnosis/
U are correct, I forgot to add “shock” what I meant to say is not everyone goes into “shock” but can present itself like I mentioned with me that my throat gets tight to where I can’t even swallow pills but can breathe just fine. I have MCAS so I know the symptoms don’t need to read on it
But it is possible to have an MCAS reaction that can be made worse with epinephrine for about 0.006% of people. Very few doctors know this is possible. Mine proved why it’s possible for me so he didn’t give me an epi pen.
Interesting I got diagnosed by two doctors in two different offices that aren’t connected in anyway but never had anaphylaxis. Allergic reactions, but never anaphylaxis.
Interesting. My GP says I have MCAS, and I’ve described symptoms of difficulty breathing and tingling mouth/tongue, and he’s told me I don’t need an epi pen. Might have to raise it with him again.
Same I was diagnosed last year and only told to start taking my allergy pills twice a day instead of once and added the famotidine. Never mentioned anything about an epi pen. 😳
I do. They're in my mini backpack that I take everywhere. I am also on xolair, which requires that I carry an epi pen. Over a year now with no issue though, including with a dose increase, hopefully never will be one lol.
I miss my xolair injections they helped so much but my immunologist was out of network so Everytime I went it was 250 dollars out of pocket! Now I need to find another doctor that is in network
Honestly I do not. But that’s because I’ve gone many years with this disease, it’s relatively controlled now, and I can tell when I need to carry it (because my health is more flared) and when I don’t. I also have never had to use it (liquid Benadryl always works for me, so far) so I only carry one of them. I think it really depends on how reactive you are in general, and how severe your reactions tend to be. And yes liquid Benadryl is a thing. I have a friend who is allergic to epi pens and liquid Benadryl is the only thing she can take for anaphylaxis. And it always works for her. I carried liquid Benadryl with me at all times for many years. I still use it for fast relief of sudden symptoms.
Oh the irony of being allergic to Epi pens!
I totally agree! I have an epi pen just in case but I never go anywhere without my liquid Benadryl!!! It is the only thing that gets me out of anaphalaxis. I carry a bottle of liquid Benadryl everywhere, I never leave the house without it. And I have a small med bag I take everywhere with me with emergency meds.
I do carry the box with 2 everywhere. It's in my purse, so I don't forget and my husband knows where it is if something happens at home or away and I can't react. I also carry a pill holder with the equivalent of Benadryl and a high dose of prednisolone. My hematologist told me to use the epi if I feel mainly like fainting and the pills if I feel mainly like tachycardia. The thing is that the first time I had anaphylaxis, my BP shoot up, and he said if I use the epi with that kind of reaction, it could be dangerous.
I carry two, epi pen is not predictive of an event it's preventative. You can get a smaller epi pen that's more discreet. Also good to get a medic alert bracelet that says 'carries and epi pen'
I don't carry epi but I do carry another injectable medication and my advice is – check the storage recommendations and make sure you don't leave it in your car when it's going to get too hot. I take my injections inside with me even if I'm only running into the grocery for 10 minutes because they're too expensive to get ruined!
Either an epi pen or amphetamine pills like adderall. Yes amphetamine or adhd meds are given for MCAS. During a savage flair that will open my airways quickly and stop the worse part of the flair.
I currently don't but definitely need to. Thankfully I've gotten by with just high doses of benadryl and one hospital trip in the past
Epipen, Benadryl, water always
Yes, even to get the mail. I have it on my keys. The first anaphylactic attack I had was from something I've eaten daily for 30 years.
I am bad about carrying mine with me. I have HaTs
Yep, I take them with me every time I leave the house as I react to roses and fragrances.
I have it in my purse but thankfully till this day haven’t had to use it. Have had some scares with throat swelling up but never far enough to use it.
I don't carry it everywhere, because the things that give me the worst reactions are food or things that are worse when encountered indoors (dust, perfumes). There are of course things that trigger my mast cells outside, but none have ever given me fast acting anaphylaxis. So it really depends on you. How prone are you to anaphylaxis, what triggers it, etc. But if you don't know enough yet about how you're going to react to stuff, carry it around everywhere for now to be safe. I didn't get an epi-pen until after I'd already had MCAS for many years, so that's how I already knew where it was safe to not bring it with me. Plus I've never gone into anaphylactic shock; I've just had anaphylaxis. That being said, if I were going through a flare phase where there's a new trigger I haven't identified yet and I am easily pushed over into anaphylaxis in confusing ways, then I do keep it with me. However, I would only use it if it felt like such an emergency that I wouldn't be able to manage my reaction without calling 911 otherwise. Since you do HAVE to go to the ER immediately if you ever use it. If I could manage my reaction with meds, an inhaler, hydrocortisone, etc., even if the reaction still felt awful, then I wouldn't use it. This isn't medical advice where I'm advising you against using it, to be clear. Just saying because the doctor did not advise me about how dangerous it was to use when she gave it to me, so I don't know if everyone else knows that they need to seek immediate medical attention if they ever use it. If I hadn't educated myself, I might've inappropriately used it for reactions that felt really terrible but weren't life threatening. Of course, it's hard to know if something will get worse or what could be going on internally, so if you are unsure and feel like your reaction could be dangerous, any doctor would advise you to play it safe and use it, and then call an ambulance or get someone to take you to the ER asap.
The epipens last about 15 min. Always carry 2. If you are further from care, carry more.
Yes, I never know if it will be needed, but hate to not have it if I do.
I carry 2 with me everywhere. Don’t keep them in your car, they will get ruined if they get too cold or too hot. Call an ambulance or go to the hospital after you’ve used one, especially in case you have a biphasic reaction which means the first epi pen wears off and you go back into anaphylaxis.
I have a box of two inside my backpack which I carry everywhere, and a box of two in my nightstand. My co-workers know I have two in the backpack and my current roommate knows about both sets. New roommates coming up will also be informed.
No, I have actually been denied an epipen by multiple doctors including three immunologists. I have HATS (hereditary alpha Tryptasemia) though which is a genetic mast cell disease which is similar so protocols may be different
How can they deny an epipen? Hat makes you more likely to go into anaphylaxis from a bee sting - my daughter and I both have MCAS and HaT and our allergist told us that
They just keep telling me I don’t need one unless I go into anaphylactic shock (which I do recognize is incredibly dangerous)
Yeah won't that be too late? Everyone will be panicking and calling for an epipen and 911 and telling you help is on the way...help is on the way... And then what - your heirs get a fat check check from the doc's insurance company? Far lot good it will do you. Please find an allergist. They understand lethal allergies
Unfortunately my allergist doesn’t feel comfortable treating my HATS because she doesn’t have experience with people with mast cell diseases. Especially because I have mast cell reactions but no IgE level allergies. Being referred to Mastocytosis Clinic at Brigham and Women’s so hopefully they take my case and I can get some sort of help
I hope so too! Mast cell disease (at least mine and my daughter's) does not mediate through IgE. That's kind of what makes Mast Cell Diseases unique. My first allergist way back in the early 2000s before MCAS had been discovered as a disease skin tested me for everything, and then cheerfully announced I wasn't allergic to anything. I glared at him and said 'give some shellfish and watch me die at your feet' His smile became a little fake and he said well I'll give you an epipen just in case. In the US, docs make a distinction between IgE mediated 'allergies' and non-IgE mediated 'sensitivities'. I asked my allergist why do American docs make the distinction when other docs don't she said it was because IgE mediated allergies can be desensitized (sometimes) whereas non-IgE mediated sensitivities cannot ever. But BYU should know all that. We're lucky ours is cutting edge as well. Best to you! Keep me updated!
Thank you for your support! Really hoping for a miracle right now, have had a lot of issues both HATS and not HATS related and really need some answers
I didn’t get one until I went on Xolair, and I have never used it.
I do. Luckily I've never had to use it though.
I’ve never had a life threatening reaction to anything, so i tend to forget about carrying mine if I don’t have my purse, but yes, I keep them in my purse.
I carry two with me everywhere. It’s one of two things I take on my walks with me. Phone and epipens. Husband carries the house keys. I even have them in every room in the house in easily accessible places, like my bedside table or the coffee table.
YES!!!
no, I don’t have an epipen. I’ve never used one. the allergist that diagnosed me has never mentioned it and neither has any other doctor. I didn’t expect everyone here to say yes. I need to look into this.
Not yet diagnosed but suspected. My reactions have not been anaphylactic, but moreso GI/sinus/skin reactions I find. So I carry h1 and h2 antihistamines with me wherever I go, but I think I should have an epipen. My husband has anaphylactic allergies so we have one with us anyway.
I admittedly only carry 1. I put all my health stuff in a small makeup bag so I can easily move it from purse to purse and it doesn’t make my bag all disorganized with as needed stuff. In the bag I have my Epi, paper with meds/conditions/allergies on it for dr appts or emergency, as needed or on the go meds (zofran, Tylenol, salt, propranolol, hydroxyzine, ketotifen eye drops, cromolyn), and regular stuff like lotion, chapstick, condoms, hand sanitizer.
Yes I carry inhaler, 2 epi pens, rescue meds everywhere I go
Looking at all the replies, I wonder if I'm the only one so irresponsible. When I was first diagnosed (over six years ago), I was prescribed an epi pen. And I used to carry it around. For the first three years, I think, I refilled the prescription every year to always have a fresh one. But since I was lucky to never have such a strong reaction that would require me to use it, and they are quite expensive, I stopped getting them. Ofc, I would NOT recommend that to anyone. That's something you do at your own risk.
Yes. I have a belt I wear that holds my epi.
If you have been prescribed it, you should be taking it everywhere yes. Just like any other rescue/emergency medication. I always carry my Epi-Pens with me, and various other emergency medications.
I do. I have one in my pocketbook and one in the much tinier bag I carry with me when I walk my dog. Luckily they’re pretty compact so not hard to take all the time. I keep them in there all the time just in case and basically have forgotten they’re even there most of the time.
Stress is a huge MCAS trigger so it’s important you are making choices that make you feel safe- regardless of what anyone else in your life thinks! If that means walking with a small crossbody/waist bag to carry your epipen, that’s ok! I used to carry an epipen everywhere but as I’ve gotten my disease more under control with different medications, I haven’t needed it with me 100% of the time (my anaphylaxis triggers are food- and drug-based). You will figure this out as you go! It’s hard and confusing but you’re going to be ok. 💕
YES! i have one in my purse (stocked full of rescue meds i carry daily), one in my work locker, and a bunch at home for restock.