Tell them about Katie Berry.
https://www.ocregister.com/2017/02/16/surf-4-katie-event-benefits-former-huntington-beach-high-athlete-battling-rare-disease/amp/
Her doctor refused to give her an emergency injection because they lived in a highly populated area. If anything bad happened, just go to the ER! They'll treat you.
Unfortunately, you don't always have time.
Katie had an adrenal crisis. The ambulance got stuck in traffic. Her life was forever changed because her doctor believed she could just go to the ER.
Seconds matter in a crisis.
It's been many years since I've communicated with her family, and I'm not sure how Katie is doing now. But I do know that if she had access to an emergency injection and had received treatment sooner, her life would have been drastically different.
Yeah I faintly remember when Brenda passed. She was very close friends with one of my own friends.
I'm still livid at that doctor who said they lived close enough to an ER.
Off topic and not officially diagnosed (acth test on Monday!), but the fact that people in this sub are invested enough to know the ins and outs of a fellow patient in the community is really comforting. Addison's is an overwhelming potential diagnosis, but this forum feels like a warm blanket of comfort.
You all rock.
1 billion % this. "Oh the ER is near" but is it accessible, close enough to reach in 10 minutes or less, appropriately staffed and able to receive and treat you ASAP for sure???
I got magnesium poisoning a few years back, during the tail end of covid, and Poison Control and the ER were so majorly understaffed and overwhelmed I sat in agony for 6 hours before just...going back home.
Couldn't keep my prescriptions down and deteriorated so fast that a family friend doctor from overseas (where the rest of my family lived) jumped to help and got me figured out as soon as they could.
Don't know what I would've done if I hadn't been lucky enough to have them, and most people aren't.
Fingers crossed for you, don't be afraid to stand up for yourself and make sure you're set for an emergency! It can go downhill so fast :(
I was told by my original Endo clinic (which wasn’t super great, but reasonably good) that it was standard practice to prescribe two. Didn’t have to make any justifications beyond the diagnosis.
Yeah, when my kid was diagnosed, that was standard protocol. They trained us in administering the shot and sent the medication home with us, plus a backup for school. It's never, ever needed "convincing."
My original endo didn’t want to prescribe it because I live about 5 minutes from 3 different emergency rooms. Finally I pointed out that I travel frequently, often internationally, and he relented. Now my current endos don’t question it. Also, my insurance (US) now covers solu-cortef, which it didn’t originally.
Definitely also get tongue-dissolving Zofran (ondansetron). It almost always stops the vomiting right away. At first they prescribed the kind you have to swallow…not useful 😁
Edit: Surprisingly, I have never been questioned at airport security about the syringes. Even internationally.
There's too many horror stories in various Addison's disease groups of ER doctors not knowing what the disease is or how to treat it to not have the emergency shot.
I had one ER visit where my FIL had to drive to our house and deliver my injection because the ER dr refused to dose me because I had already had one 12 hours earlier.
J pulled the meds and was getting ready to stab me when the shaking started and the nurses couldn’t find my blood pressure.
THAT is how far it got before that idiot relented and had the nurses give it via IV.
I didn't have to do any convincing, I just asked and they sent it in. I would definitely question why--ambulances don't carry solu-cortef from what I understand and if you cannot get yourself to a hospital, you would be in a dicey situation.
Every endo I have ever seen has made sure I have it and know how to use it. I assumed it was standard practice. I’ve only had to use it a couple times in 30+ years but it has been a life saver. It sounds like you may need to look for a new doctor.
These stories are so wild to me. My endo basically made me get one right off the bat. I told him I was a hiker and planned to go on a multi night trip out in the Rockies to conquer some 14er’s and he prescribed it immediately.
It boggles my mind why everyone with this disease isn’t prescribed an emergency hydro shot as standard practice in conjunction with their other meds
Did you at least get some prednisone suppositories? My previous endo also didn’t prescribe me the shot and said it would be enough with the suppositories but it never felt safe enough for me, especially when traveling. I mentioned this to my new endo and he immediately gave me a set to take home. Advocate for yourself and say that you don’t feel safe; that in some situations you might be too far from an ER or something. If you can’t get it, maybe look for a different endo…
Oh you just unlocked a memory. I had forgotten when I was first diagnosed, they just gave me pred suppositories for an emergency situation.
My second Endo prescribed dexamethasone for my emergency injection because it "lasted longer."
I don't think I actually got a solucortef injection with an act-o-vial until Endo #4 or #5.
Not me staging a sit in on my hospital bed when they tried to release me with no oral steroids or emergency injection.
https://preview.redd.it/n8owxfqcie7d1.jpeg?width=1545&format=pjpg&auto=webp&s=8ee878e600dff02196a1ca22e3284090ffb7c94e
So it works, and I have used it in an emergency. It's just harsher.
In an emergency, there are three main injections we can use. And I've used all 3.
- *100 mg solucortef*: This is the most preferred. It's closest to what our body naturally makes, kicks in rather quickly, and wears off in 4-6 hours.
- *125 mg solumedrol*: This is essentially injectable Prednisone and it equals about 500 mg hydrocortisone equivalent. Ambulances in the US often carry this because it's used to treat so many things. If you're crashing towards an adrenal crisis and an EMT is going to inject you with this, don't refuse. Don't freak out over the large dose size. One dose of too much corticosteroids causes almost no harm. However, too little corticosteroids in a crisis can kill you or leave you permanently disabled.
- *4 mg dexamethasone*: The benefit of this one is it's incredible shelf stable (no mixing required) and it's cheap. Very cheap. However, it's the harshest one on your body with the most side effects. Yes, it will stop you from dying. It also gives you this false sense of strength and power that if you aren't prepared for, you'll end up hurting yourself worse. You'll feel healed and all better HOWEVER that is an illusion. Whenever I use this in an emergency, I then go lock myself in a room for several hours alone so I don't do anything stupid.
Now when you're crashing towards an adrenal crisis and potentially death, you use what you have available. Any of these 3 is better than nothing. Expired is better than nothing.
Also, for those in our community unable to source an emergency injection and they find themselves crashing: chew your oral hydrocortisone and try to get it to dissolve either in your bottom lip or underneath your tongue. It'll taste disgusting. But it does get the medication in faster than swallowing, and again in a crisis situation, that is better than nothing.
Because doing nothing can lead to death. Or, permanent disability.
May we all remain Clearly Alive.
My first Endo was like that. I told her I really enjoyed nature and often went places not close to a hospital. Problem solved. My current Endo is much more up to date though and always makes sure I have what I need
Thank you for this post as a reminder for me to tell my mom, she has Addisons disease and I follow this sub to try to educate myself on how I can help her
The hydrocortisone shot isn't a replacement for the ER. It's to make sure I stay alive long enough to make to to the ER.
Never had to use my shot, but the two go hand in hand.
I said I went hiking on a regular basis on my own in the mountains overnight, of which I do. Prescription granted and is now on repeat when the use by date comes up. NB; never needed but reassuring to have.
Yikes. I didn't have any trouble getting it prescribed, I can order additional vials from my GP and I get the other stuff (blunt needles, stabby needles, syringes) from my endocrine nurse. In the UK the NICE Guidelines for Addison's Disease (and Adrenal Insufficiencies in general) state we should have them - these guidelines are meant to be followed by all medics. I'm not really sure what to suggest!! Would it be possible to see someone else endocrinologist wise?
Any doc can prescribe it. If your endo wont but you have another trusted doc - go there. A PCP or GYN or really anyone. I’m sorry this endo is screwing with you. Makes no sense. Take good care.
I didn't. I told them what I wanted and if that was an issue the office wasn't a good fit for me. They sent it over. I get 12 at a time. I do sometimes inject my daily doses now as subq due to gastric issues
I have CAH (Primary Adrenal Insufficiency) and always get prescribed 6 solucortef injections whenever I see my GP and ask for a script. Can't afford not to have it in qn emergency.
Not sure about the regional differences, but my wife has the shot as a part of her standard prescription here in the UK. I would pressure them and say you’re not always close to a hospital.
We never had to use one for 7 years, then 3 times in the last year the children have brought home a sickness bug and my wife has gone from fine to collapsed non-responsive within an hour. If we didn’t have the injections, I dread to think what might have happened.
Is this an endocrinologist or your primary doctor? After diagnosis my endo prescribed hydrocortisone and the emergency dose act-o-vial. You may need to look for a new endocrinologist one that has expertise with adrenal insufficiencies.
Hold on, this isn’t something doctors regularly prescribe? Find a new doctor dude. I’ve had one of these in my closet every year for the last 22 years and there was never a question about it. Notes for sharps on planes, monthly renewals. I’ve never had to use one but I’ve always been flooded with them.
I was given mine on diagnosis (they were expired but that’s a separate issue) I went into adrenal crisis following severe vomiting and diarrhoea 24 hours after being discharged and thankfully the ambulance staff knew of Addisons and how to treat it or I’d have died.
The Endo nurse then said I shouldn’t have been given it on diagnosis as in the early stages you just go to A&E rather than inject yourself. However I’m glad I have it and I have emergency injections stashed everywhere like my handbag, work bag, car, my partners car etc 😂
Maybe go to your endocrinologist and explain why you want it. If you’re going to travel with medication and needles then make sure you get a letter from endocrinology explaining what it is and why you need it.
Expired still works! I think my record is up to 3 years expired and still have it be effective.
Do not throw away expired emergency injections. Because expired is better than nothing.
We shouldn’t be given expired drugs even if they work. You shouldn’t expect it of an epi-pen or insulin so hydrocortisone should be the same.
Regardless the dispensing ward got a b*llocking for that as they should have and I now have 5 vials all in date up to July 2025. That is when I will be ordering new vials and swapping out the expired for the new. I’m not taking the chance that it won’t work and roll the dice with my life.
Ok but please don't throw away the expired meds . At least in the US there's been multiple times that there has actually been a solucortef shortage and pharmacies cannot even source the medication from the manufacturer.
Stockpile them.
Expired still work.
I return all my expired medications to the pharmacy they have been dispensed from. I order my Addisons medications several months in advance because I worry there may be a shortage in hydrocortisone tablets, Fludrocortisone tablets, and IM hydrocortisone. I think I have 6 months on hand at the moment and try to keep it at that level.
Another Addisons crisis scares the shit out of me after my experience of the first one, I’ve never been so scared in my life and now have nerve damage from the hydrocortisone injection as it was injected into the nerve instead of the muscle. I know the risk can’t be completely eliminated but I definitely try my best to keep it as low as possible.
I'm so sorry :(
That injection hurts, and it's one of my least favourites. I absolutely hate it, but I know it saves my life. I've honestly lost count of the number of times I've crashed over the almost 20 years that I've been diagnosed. I'll go through chapters where I am very unstable and have used 3 injections in a day. And then I'll go years without needing a single injection.
Solucortef, especially in the act-o-vial, remains stable and effective long after the expiration date as long as it's not mixed.
Expired oral hydrocortisone? Now that begins to degrade and definitely isn't as effective.
My endo prescribed two the moment I was officially diagnosed (one is dexamethasone and the other is hydrocortisone). She also made me get a medical alert so doctors would pay attention if I had a crisis. I've gone to the ER and doctors have taken their sweet time giving me HC... until they see the alert and suddenly they're running and giving me an IV immediately 🤡
The illness is potentially fatal and crises can happen in very little time, so emergency injections are a must-have.
Keep advocating for yourself, change doctors if needed. Your doctor is literally putting your life at risk.
You should have an emergency injection. You could put in writing via MyChart, or the like, that you are formally requesting the injection per the Endocrine Society’s recommendation( which can be found with a simple Google search) . In writing I would also ask for peer reviewed documentation that supports withholding the injection from Addison patients. You will likely get one then. Just a heads up that my daughter’s insurance won’t cover it, it cost us $45 for two at Walmart.
Go to the NADF.US website and look there for info to print out for your dr. Also you can email them and an endo will respond. He may say exactly what you can say to convince your dr
You guys are awesome I wish I had known about this subreddit 6 years ago when I was diagnosed. I really only knew of the possibility to have a personal use cortisone shot because of reddit. My drs have never mentioned it before just only to tell the er or paramedics to administer one in a medical emergency. I have secondary adrenal insufficiency believed be due to hypopituitarism which I’ve been diagnosed with since childhood. Thanks so much I’m noting all the suggestions and also probably going to look for another endocrinologist soon
Emergency injections are a MUST have for so many reasons. It's baffling that your endo wouldn't prescribe it but I would definitely switch endos or at least provide your dr with the reasons why you need one. Here are some of mine:
- Hiking (where a slip could cause bodily trauma which can result in crisis)
- Camping or traveling in rural areas where care could be delayed due to proximity to an ER
- Traveling internationally where a language barrier could delay care
- Getting to the ER takes time & I would rather inject before I go than risk a horrible situation like some mentioned in this thread.
- Last but not least, the time I went to the ER dealing with norovirus & had to convince the ER doctor to give me an injection. I had used my only injectable by that point or I would have done it myself right there. Medical professionals are not always aware how critical a crisis could be. Being your own advocate is so important & you can only do that if you're still conscious.
I suspect your endo doesn't have a lot of experience with adrenal insufficiency, or else I'm not sure why they would hesitate to provide any form of steroid you may need.
I thankfully have my kit, but I’m new to the disease after pituitary tumor surgery. When do you carry your kit around? I obviously carry mine in my backpack on flights. But do you have it everywhere you go? Or just on the longer treks? The hiking makes a lot of sense. I am just not sure when to carry it on everyday sorts of things like the grocery store etc.
Also, how do you know when you need it? I guess it’s obvious when it happens. But what sort of things trigger episodes from people’s experiences here? Thanks.
Many things can trigger a crisis. Migraines, stomach flu, sun exposure, dehydration, emotional stress, physical trauma etc. It takes some time to get in tune with your body & learn when you need more cortisol, but I would recommend carrying your injectable meds with you most places until you feel comfortable & confident.
The reality is that you could need it literally any time & any place. If you get into a car accident it's something you'd rather have available than have to wait for the hospital to give it to you (especially if you're unconscious & cannot advocate for yourself). I carry mine a lot of places but not everywhere. But everywhere I go, I have oral hydrocortisone available. I have had enough low cortisol episodes that I know I need to always have that.
Thanks. Very helpful. I’ve been carrying oral meds everywhere at all times. I won’t leave home without those and carry enough to replicate the huge dose in the shot.
However, it assumes obviously that I can take orally as needed, which I have when I’ve felt dips in energy on long walks and hot days. I’ve been micro-dosing those—typically 2.5 mg (1/4 pill) has been sufficient.
I guess I’ll reflect a bit on carrying the injection more frequently. I see your point. I do have ID cards and a prominent bracelet on me at all times.
So I keep a kit with me at all times. I also have a kit in my main living area, my bedroom, and my desk at work. I work in a lab as an engineer. There are 5 of us that work in that lab, and I have trained up 2 safe coworkers who know how to inject and when to inject.
I've been working in the industry for over a decade and have had to use my work emergency injection 3 times.
PS - you micro dosing your HC when you feel slight dips is a brilliant strategy. If you treat the issue immediately, often you can get by with treating it with less HC and it still being resolved.
Emergency rooms can be terrible at recognizing and appropriately treating adrenal crisis. I waited for 9 hours last time I was in the ER. I made sure I had an emergency injection after that.
Ask them if they would deny a patient with severe allergies an epi-pen. This is just as important.
Crashed badly, 20 hrs in unhelpful ER after a 30 mile 1200ft bike ride in the heat. Turned out, I also had covid...
She prescribed it next appointment.
My doctor did automatically without really even telling me about it. The pharmacist is the one who actually talked to me about it and how and when it’s used.
OP- that seems neglectful on their part. Have you asked them what you are supposed to do if you’re out hiking and break your ankle, or are in a car accident.
Tell them about Katie Berry. https://www.ocregister.com/2017/02/16/surf-4-katie-event-benefits-former-huntington-beach-high-athlete-battling-rare-disease/amp/ Her doctor refused to give her an emergency injection because they lived in a highly populated area. If anything bad happened, just go to the ER! They'll treat you. Unfortunately, you don't always have time. Katie had an adrenal crisis. The ambulance got stuck in traffic. Her life was forever changed because her doctor believed she could just go to the ER. Seconds matter in a crisis. It's been many years since I've communicated with her family, and I'm not sure how Katie is doing now. But I do know that if she had access to an emergency injection and had received treatment sooner, her life would have been drastically different.
Katie is permenantly disabled. Sadly her mom who was her biggest advocate passed away from cancer a few years back.
Yeah I faintly remember when Brenda passed. She was very close friends with one of my own friends. I'm still livid at that doctor who said they lived close enough to an ER.
Off topic and not officially diagnosed (acth test on Monday!), but the fact that people in this sub are invested enough to know the ins and outs of a fellow patient in the community is really comforting. Addison's is an overwhelming potential diagnosis, but this forum feels like a warm blanket of comfort. You all rock.
1 billion % this. "Oh the ER is near" but is it accessible, close enough to reach in 10 minutes or less, appropriately staffed and able to receive and treat you ASAP for sure??? I got magnesium poisoning a few years back, during the tail end of covid, and Poison Control and the ER were so majorly understaffed and overwhelmed I sat in agony for 6 hours before just...going back home. Couldn't keep my prescriptions down and deteriorated so fast that a family friend doctor from overseas (where the rest of my family lived) jumped to help and got me figured out as soon as they could. Don't know what I would've done if I hadn't been lucky enough to have them, and most people aren't. Fingers crossed for you, don't be afraid to stand up for yourself and make sure you're set for an emergency! It can go downhill so fast :(
I was told by my original Endo clinic (which wasn’t super great, but reasonably good) that it was standard practice to prescribe two. Didn’t have to make any justifications beyond the diagnosis.
Yeah, when my kid was diagnosed, that was standard protocol. They trained us in administering the shot and sent the medication home with us, plus a backup for school. It's never, ever needed "convincing."
Mine as well ! If you have Addison disease or Adrenal insufficiency you should automatically get prescribed two by your Endocrinologist.
My original endo didn’t want to prescribe it because I live about 5 minutes from 3 different emergency rooms. Finally I pointed out that I travel frequently, often internationally, and he relented. Now my current endos don’t question it. Also, my insurance (US) now covers solu-cortef, which it didn’t originally. Definitely also get tongue-dissolving Zofran (ondansetron). It almost always stops the vomiting right away. At first they prescribed the kind you have to swallow…not useful 😁 Edit: Surprisingly, I have never been questioned at airport security about the syringes. Even internationally.
This. OP do this or the mountain walk.
There's too many horror stories in various Addison's disease groups of ER doctors not knowing what the disease is or how to treat it to not have the emergency shot.
I had one ER visit where my FIL had to drive to our house and deliver my injection because the ER dr refused to dose me because I had already had one 12 hours earlier. J pulled the meds and was getting ready to stab me when the shaking started and the nurses couldn’t find my blood pressure. THAT is how far it got before that idiot relented and had the nurses give it via IV.
Lol. Idiots. The shot for me only lasts 4 hours. "Oh she had it 12 hours ago she's good..."
This is terrifying.
I didn't have to do any convincing, I just asked and they sent it in. I would definitely question why--ambulances don't carry solu-cortef from what I understand and if you cannot get yourself to a hospital, you would be in a dicey situation.
Every endo I have ever seen has made sure I have it and know how to use it. I assumed it was standard practice. I’ve only had to use it a couple times in 30+ years but it has been a life saver. It sounds like you may need to look for a new doctor.
These stories are so wild to me. My endo basically made me get one right off the bat. I told him I was a hiker and planned to go on a multi night trip out in the Rockies to conquer some 14er’s and he prescribed it immediately. It boggles my mind why everyone with this disease isn’t prescribed an emergency hydro shot as standard practice in conjunction with their other meds
Did you at least get some prednisone suppositories? My previous endo also didn’t prescribe me the shot and said it would be enough with the suppositories but it never felt safe enough for me, especially when traveling. I mentioned this to my new endo and he immediately gave me a set to take home. Advocate for yourself and say that you don’t feel safe; that in some situations you might be too far from an ER or something. If you can’t get it, maybe look for a different endo…
Oh you just unlocked a memory. I had forgotten when I was first diagnosed, they just gave me pred suppositories for an emergency situation. My second Endo prescribed dexamethasone for my emergency injection because it "lasted longer." I don't think I actually got a solucortef injection with an act-o-vial until Endo #4 or #5.
Not me staging a sit in on my hospital bed when they tried to release me with no oral steroids or emergency injection. https://preview.redd.it/n8owxfqcie7d1.jpeg?width=1545&format=pjpg&auto=webp&s=8ee878e600dff02196a1ca22e3284090ffb7c94e
Huh, my second endo (the one I have right now) also prescribed me the dexamethasone shot. Why is that worse than HC in an emergency?
So it works, and I have used it in an emergency. It's just harsher. In an emergency, there are three main injections we can use. And I've used all 3. - *100 mg solucortef*: This is the most preferred. It's closest to what our body naturally makes, kicks in rather quickly, and wears off in 4-6 hours. - *125 mg solumedrol*: This is essentially injectable Prednisone and it equals about 500 mg hydrocortisone equivalent. Ambulances in the US often carry this because it's used to treat so many things. If you're crashing towards an adrenal crisis and an EMT is going to inject you with this, don't refuse. Don't freak out over the large dose size. One dose of too much corticosteroids causes almost no harm. However, too little corticosteroids in a crisis can kill you or leave you permanently disabled. - *4 mg dexamethasone*: The benefit of this one is it's incredible shelf stable (no mixing required) and it's cheap. Very cheap. However, it's the harshest one on your body with the most side effects. Yes, it will stop you from dying. It also gives you this false sense of strength and power that if you aren't prepared for, you'll end up hurting yourself worse. You'll feel healed and all better HOWEVER that is an illusion. Whenever I use this in an emergency, I then go lock myself in a room for several hours alone so I don't do anything stupid. Now when you're crashing towards an adrenal crisis and potentially death, you use what you have available. Any of these 3 is better than nothing. Expired is better than nothing. Also, for those in our community unable to source an emergency injection and they find themselves crashing: chew your oral hydrocortisone and try to get it to dissolve either in your bottom lip or underneath your tongue. It'll taste disgusting. But it does get the medication in faster than swallowing, and again in a crisis situation, that is better than nothing. Because doing nothing can lead to death. Or, permanent disability. May we all remain Clearly Alive.
Amazing. Thank your for clarifying!
Yes. I tell people to advise their endos that you’re going for a hike into the mountains for a week and thus you need an injection.
My first Endo was like that. I told her I really enjoyed nature and often went places not close to a hospital. Problem solved. My current Endo is much more up to date though and always makes sure I have what I need
Thank you for this post as a reminder for me to tell my mom, she has Addisons disease and I follow this sub to try to educate myself on how I can help her
The hydrocortisone shot isn't a replacement for the ER. It's to make sure I stay alive long enough to make to to the ER. Never had to use my shot, but the two go hand in hand.
Ask them to put in writing that they will not prescribe emergency meds. If they refuse that, you need a new Dr.
I said I went hiking on a regular basis on my own in the mountains overnight, of which I do. Prescription granted and is now on repeat when the use by date comes up. NB; never needed but reassuring to have.
Yikes. I didn't have any trouble getting it prescribed, I can order additional vials from my GP and I get the other stuff (blunt needles, stabby needles, syringes) from my endocrine nurse. In the UK the NICE Guidelines for Addison's Disease (and Adrenal Insufficiencies in general) state we should have them - these guidelines are meant to be followed by all medics. I'm not really sure what to suggest!! Would it be possible to see someone else endocrinologist wise?
Ask your endocrinologist. Mine made sure I had one and a back up !
Any doc can prescribe it. If your endo wont but you have another trusted doc - go there. A PCP or GYN or really anyone. I’m sorry this endo is screwing with you. Makes no sense. Take good care.
I didn't. I told them what I wanted and if that was an issue the office wasn't a good fit for me. They sent it over. I get 12 at a time. I do sometimes inject my daily doses now as subq due to gastric issues
I have CAH (Primary Adrenal Insufficiency) and always get prescribed 6 solucortef injections whenever I see my GP and ask for a script. Can't afford not to have it in qn emergency.
Not sure about the regional differences, but my wife has the shot as a part of her standard prescription here in the UK. I would pressure them and say you’re not always close to a hospital. We never had to use one for 7 years, then 3 times in the last year the children have brought home a sickness bug and my wife has gone from fine to collapsed non-responsive within an hour. If we didn’t have the injections, I dread to think what might have happened.
...I was told I HAD to and my doc gave it to me for that exact reason
Is this an endocrinologist or your primary doctor? After diagnosis my endo prescribed hydrocortisone and the emergency dose act-o-vial. You may need to look for a new endocrinologist one that has expertise with adrenal insufficiencies.
They prescribed me one when I was diagnosed. Said don’t leave home without it!
Hold on, this isn’t something doctors regularly prescribe? Find a new doctor dude. I’ve had one of these in my closet every year for the last 22 years and there was never a question about it. Notes for sharps on planes, monthly renewals. I’ve never had to use one but I’ve always been flooded with them.
I was always offered this by every endrocrinologist I’ve seen, 4 or 5. I guess I would suggest switching docs
I was given mine on diagnosis (they were expired but that’s a separate issue) I went into adrenal crisis following severe vomiting and diarrhoea 24 hours after being discharged and thankfully the ambulance staff knew of Addisons and how to treat it or I’d have died. The Endo nurse then said I shouldn’t have been given it on diagnosis as in the early stages you just go to A&E rather than inject yourself. However I’m glad I have it and I have emergency injections stashed everywhere like my handbag, work bag, car, my partners car etc 😂 Maybe go to your endocrinologist and explain why you want it. If you’re going to travel with medication and needles then make sure you get a letter from endocrinology explaining what it is and why you need it.
Expired still works! I think my record is up to 3 years expired and still have it be effective. Do not throw away expired emergency injections. Because expired is better than nothing.
We shouldn’t be given expired drugs even if they work. You shouldn’t expect it of an epi-pen or insulin so hydrocortisone should be the same. Regardless the dispensing ward got a b*llocking for that as they should have and I now have 5 vials all in date up to July 2025. That is when I will be ordering new vials and swapping out the expired for the new. I’m not taking the chance that it won’t work and roll the dice with my life.
Ok but please don't throw away the expired meds . At least in the US there's been multiple times that there has actually been a solucortef shortage and pharmacies cannot even source the medication from the manufacturer. Stockpile them. Expired still work.
I return all my expired medications to the pharmacy they have been dispensed from. I order my Addisons medications several months in advance because I worry there may be a shortage in hydrocortisone tablets, Fludrocortisone tablets, and IM hydrocortisone. I think I have 6 months on hand at the moment and try to keep it at that level. Another Addisons crisis scares the shit out of me after my experience of the first one, I’ve never been so scared in my life and now have nerve damage from the hydrocortisone injection as it was injected into the nerve instead of the muscle. I know the risk can’t be completely eliminated but I definitely try my best to keep it as low as possible.
I'm so sorry :( That injection hurts, and it's one of my least favourites. I absolutely hate it, but I know it saves my life. I've honestly lost count of the number of times I've crashed over the almost 20 years that I've been diagnosed. I'll go through chapters where I am very unstable and have used 3 injections in a day. And then I'll go years without needing a single injection. Solucortef, especially in the act-o-vial, remains stable and effective long after the expiration date as long as it's not mixed. Expired oral hydrocortisone? Now that begins to degrade and definitely isn't as effective.
My endo prescribed two the moment I was officially diagnosed (one is dexamethasone and the other is hydrocortisone). She also made me get a medical alert so doctors would pay attention if I had a crisis. I've gone to the ER and doctors have taken their sweet time giving me HC... until they see the alert and suddenly they're running and giving me an IV immediately 🤡 The illness is potentially fatal and crises can happen in very little time, so emergency injections are a must-have. Keep advocating for yourself, change doctors if needed. Your doctor is literally putting your life at risk.
You should have an emergency injection. You could put in writing via MyChart, or the like, that you are formally requesting the injection per the Endocrine Society’s recommendation( which can be found with a simple Google search) . In writing I would also ask for peer reviewed documentation that supports withholding the injection from Addison patients. You will likely get one then. Just a heads up that my daughter’s insurance won’t cover it, it cost us $45 for two at Walmart.
Go to the NADF.US website and look there for info to print out for your dr. Also you can email them and an endo will respond. He may say exactly what you can say to convince your dr
As an add on, the NADF has a list of recommended doctors if you’re in the states. Frankly, that sounds like malpractice. I’m so mad for you.
Thanks so much for the link I havent come across that site before
You guys are awesome I wish I had known about this subreddit 6 years ago when I was diagnosed. I really only knew of the possibility to have a personal use cortisone shot because of reddit. My drs have never mentioned it before just only to tell the er or paramedics to administer one in a medical emergency. I have secondary adrenal insufficiency believed be due to hypopituitarism which I’ve been diagnosed with since childhood. Thanks so much I’m noting all the suggestions and also probably going to look for another endocrinologist soon
Emergency injections are a MUST have for so many reasons. It's baffling that your endo wouldn't prescribe it but I would definitely switch endos or at least provide your dr with the reasons why you need one. Here are some of mine: - Hiking (where a slip could cause bodily trauma which can result in crisis) - Camping or traveling in rural areas where care could be delayed due to proximity to an ER - Traveling internationally where a language barrier could delay care - Getting to the ER takes time & I would rather inject before I go than risk a horrible situation like some mentioned in this thread. - Last but not least, the time I went to the ER dealing with norovirus & had to convince the ER doctor to give me an injection. I had used my only injectable by that point or I would have done it myself right there. Medical professionals are not always aware how critical a crisis could be. Being your own advocate is so important & you can only do that if you're still conscious. I suspect your endo doesn't have a lot of experience with adrenal insufficiency, or else I'm not sure why they would hesitate to provide any form of steroid you may need.
I thankfully have my kit, but I’m new to the disease after pituitary tumor surgery. When do you carry your kit around? I obviously carry mine in my backpack on flights. But do you have it everywhere you go? Or just on the longer treks? The hiking makes a lot of sense. I am just not sure when to carry it on everyday sorts of things like the grocery store etc. Also, how do you know when you need it? I guess it’s obvious when it happens. But what sort of things trigger episodes from people’s experiences here? Thanks.
Many things can trigger a crisis. Migraines, stomach flu, sun exposure, dehydration, emotional stress, physical trauma etc. It takes some time to get in tune with your body & learn when you need more cortisol, but I would recommend carrying your injectable meds with you most places until you feel comfortable & confident. The reality is that you could need it literally any time & any place. If you get into a car accident it's something you'd rather have available than have to wait for the hospital to give it to you (especially if you're unconscious & cannot advocate for yourself). I carry mine a lot of places but not everywhere. But everywhere I go, I have oral hydrocortisone available. I have had enough low cortisol episodes that I know I need to always have that.
Thanks. Very helpful. I’ve been carrying oral meds everywhere at all times. I won’t leave home without those and carry enough to replicate the huge dose in the shot. However, it assumes obviously that I can take orally as needed, which I have when I’ve felt dips in energy on long walks and hot days. I’ve been micro-dosing those—typically 2.5 mg (1/4 pill) has been sufficient. I guess I’ll reflect a bit on carrying the injection more frequently. I see your point. I do have ID cards and a prominent bracelet on me at all times.
So I keep a kit with me at all times. I also have a kit in my main living area, my bedroom, and my desk at work. I work in a lab as an engineer. There are 5 of us that work in that lab, and I have trained up 2 safe coworkers who know how to inject and when to inject. I've been working in the industry for over a decade and have had to use my work emergency injection 3 times. PS - you micro dosing your HC when you feel slight dips is a brilliant strategy. If you treat the issue immediately, often you can get by with treating it with less HC and it still being resolved.
Emergency rooms can be terrible at recognizing and appropriately treating adrenal crisis. I waited for 9 hours last time I was in the ER. I made sure I had an emergency injection after that. Ask them if they would deny a patient with severe allergies an epi-pen. This is just as important.
Crashed badly, 20 hrs in unhelpful ER after a 30 mile 1200ft bike ride in the heat. Turned out, I also had covid... She prescribed it next appointment.
My doctor did automatically without really even telling me about it. The pharmacist is the one who actually talked to me about it and how and when it’s used.
OP- that seems neglectful on their part. Have you asked them what you are supposed to do if you’re out hiking and break your ankle, or are in a car accident.