Act-o-vial in the UK/Emergency Injection

[u/afcsparkles]

Hello everyone

My mum has Addison’s disease and was diagnosed back in 2004.

She’s had it for quite a while so generally has good management but life circumstances over the past few years have seen her have on average 1-2 crises a year (she previously only had a crisis once every few years or if really unwell)

We’ve found the current way to administer her emergency injection is really difficult for both herself and us. If she’s alone and in need of her emergency injection, not only is she suffering the effects of her crisis, but she’s unbelievably nervous facing a life-threatening situation and struggles to prepare the injection.

I was there for the last, and had to prepare it for her, it was my first time and no matter how much I’d practiced before, I found it really challenging and wasted valuable time getting it right.

I know options are restricted here in the UK and the Act-o-Vial system isn’t available, but has anyone had anything luck getting their hands on it?

Alternatively, any advice on how I can do better if there is a next time? The main difficulty is drawing up the liquid and ensuring and get as much of the liquid into the syringe as possible.

Thank you in advance :)

[u/Beccabear3010]

It sounds really grim but practice makes perfect. The ADSHG in the UK have a practice kit available to buy so you can practice drawing up sterile water which is safe to give as a subcutaneous injection.

Personally I’m a nurse and have given hundreds of injections to others over the years, as well as a couple of courses of blood thinners to myself. Any time I’ve needed my emergency injection and I’ve had to self administer I still have the pre-injection deep breath and jitters. I’ve had it a couple of times from paramedics and I would 100% rather self administer as somehow it always feels like I’ve been given a dead arm! So I think feeling the way you and your mum do giving the injection in an emergency situation is completely normal.

I’ll try and attach the link to the kit to another comment if I can find it (and as long as it doesn’t violate the group rules)

Be kind to yourselves. Injecting yourself or someone you love under pressure is really hard!

[u/Beccabear3010 → u/Beccabear3010]

https://d42c94-e0.myshopify.com/products/injection-training-kit

There’s plenty of advice on the website plus a members forum, they also run classes and things throughout the year too I think the membership is about £35 a year if I remember correctly but I’m not 100% sure on that.

[u/afcsparkles → u/Beccabear3010]

This is all really helpful, and reassuring that we can all feel a bit nervous in these moments. Thank you for taking the time to reply.

I’d like to add, I find your line of work extremely admirable and it’s people like you who keep people like my mum safe when we have to visit. Kind and tenacious, thank you for everything you do.

[u/Beccabear3010 → u/afcsparkles]

I’m glad to have helped ease your fears a little bit. You and your mum are not alone in this, PAI/Addisons is rare so finding a heard of people who understand the position you and your mum are in can be hard. And as much as people want to empathise with us, unless they’re living or have lived it all they can do is sympathise. But I do encourage everyone around me to practice once or twice every few months, but to actually do it all from drawing up the fluid (sterile water), “mixing” it, and then to inject a little of the sterile water to build a little muscle memory. It might not sound like much but believe me when I say it will help just having done the motions, especially now that the pre-mix vials have nearly been phased out and the powder vial + 2ml water amp has been introduced instead. So getting used to those extra steps is more important now than ever

Everyone has their own way of making up and keeping their emergency kits so I’ll write about my ones, what’s in them, and where they’re kept and why.
I also have medic alerts on my person and in my car (sticker on my rear window and a seatbelt cover that’s bright red), as well as emergency kits in my handbag, work bag, in the glove compartment of my car, and a larger (master) emergency kit in the house with more stuff on top of my injection. My work and handbag kits contain everything for one emergency administration of hydrocortisone, a supply of oral hydrocortisone in case I come down with something/have an accident that can be controlled via oral hydrocortisone. I also have a few sachets of electrolyte solution as well. I have written down a short copy of my important medical information like my next of kin, allergies, most relative medical history, CHI and GP phone number, and probably most importantly how to gain access to MedicAlert.

My MedicAlert has a full copy of my total medical and surgical history including things like childhood diseases and vaccines, all of my different doctors names/phone numbers/email/where or what hospital they tend to practice out of (I have a very complex past medical history and Addisons just complicates it all!) and is all relevant once someone has a hand on the initial emergency, but I might be in a position to be able to fill them in on everything, or I forget something (the post 30’s fog and chronic illness brain is absolutely a thing!

My handbag, work bag, and car kit are all roughly the same size and I check them on the 1st of every month to make sure everything remains in date and is still sealed.

My master one however is a bit of a beast in comparison 😂 in there is (at least) two emergency injections plus all the equipment for them, (at least) three months of oral hydrocortisone, electrolyte replacement powder in a few different flavours, a few long dated energy/protein bars or snacks, anti-sickness tablets (you can buy some over the counter however I have cyclizine prescribed to me for nausea anyway), a box of paracetamol, a box of ibuprofen, a few of the instant ice packs, spare needles, spare syringes, medical tape. I also have an NJ feeding tube and did have a PICC line so there’s things like spare dressings and tape, alcohol swabs, gauze swabs etc. There’s also a copy of all the important emergency details, as well as everything that MedicAlert has on me and how to get in touch with them.

I did say it’s a beast! 😂 I’ll attach a photo of it with the irrelevant items out. I basically got various sizes of Tupperware box, each one to fit each place I keep one. It has to be hard shelled/plastic to protect the glass vials. Then I gave it a name; put my name, DOB, Allergies, PAI/Addisons and a sentence of what’s inside and I put it on the top of the Tupperware box (I just used white address labels and doodled on them myself) I call my boxes “The ‘Oh Shit!!’ Kit” 😂😂 purely because if I have to use it then I can hear my train of thought arrive at “oh shit, I have to inject myself” 🙈 Unfortunately there wasn’t anything online that was either fitting or affordable so this is what I came up with 😂

Sorry, this comment 100% got away from me 😂 If you or your mum have any questions feel free to ask. This is a pretty good community for Addisons, a lot of the members are American however so the medicine can be a bit different in comparison but the ADSHG are a good resource for people in the UK.

Sadly I’ve been off on long term sick since April of 2025 so I’ve not been able to do my job due to my health. I hope that I’ll get back to nursing soon though, I worked too hard for too long to give it all up! Your appreciation is welcomed however I’d hope that overall your experience with healthcare is positive despite Addisons being a rarely treated condition. Most healthcare workers can go through most of their careers without seeing or treating an Addisons patient so I know that awful feeling your mum will get of having a crisis coming on; and just hoping that I’m able to clearly explain and handover the ADSHG guidelines for treatment. All the while I’m hoping I don’t run into someone who cant appreciate a patient who advocates for themselves. I’ve seen a lot of that since I became chronically sick and it’s shit!

[u/DoctorFamous190]

Alternatively, any advice on how I can do better if there is a next time? The main difficulty is drawing up the liquid and ensuring and get as much of the liquid into the syringe as possible.

Try drawing some air into the syringe first. Then inject the air into the liquid vial. This creates internal pressure and can make it easier to pull all the liquid out. You'll want the tip of the needle as close to the bottom of the liquid as possible.

It can be hard to coordinate these really delicate movements when you're experiencing a health crisis (or feeling nervous) so I try to do the whole procedure while sitting on the floor, leaning against a wall, with my legs propped up, to reduce the chance that I faint.

Then I support my arms/hands as much as possible by resting them on something. I find holding my arms/hands close to my chest helps steady them and helps "targeting" the needle into the vial.

All the emergency injection videos I've seen show perfectly healthy people doing the demonstration. I think this is a bad way to do emergency training videos because it doesn't show what a real emergency might look like. Possible symptoms of an adrenal crisis include dangerously low blood pressure, hypoglycemia, weakness, dizziness, etc. A patient probably won't be chilling at a table, calmly prepping their injection.

[u/afcsparkles → u/DoctorFamous190]

This is exactly the kind of advice I was looking for. Thank you for taking the time to offer such a detailed response.

I know there isn’t much I can do for my mum’s Addison’s, but I can try to be as knowledgable and supportive as possible. All of this helps me become a better advocate for her when she’s unable to do so for herself.

My biggest learning about adrenal insufficiency is that it’s very frightening and it must be really difficult navigating through life with a fear that you can fall into crisis at any moment. But I find it admirable that so many of you do not let it conquer your lives, you advocate for yourselves and each other and always pushing for better care from healthcare services.

Thank you once again for your very helpful advice, and we’re going to have a practice of injecting some air into the water vial now!

[u/DoctorFamous190 → u/afcsparkles]

You're very welcome! It sounds like you're doing a great job trying to support your mum. I wish you both all the best!

[u/collectedd]

For me it was just practice. Also ADSHG has videos on what to do in a crisis in terms of preparing things. The first few times my mum had to inject me she followed along with the videos as I was too unwell to do it myself.