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PMRGCAuk
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Adrenal Insufficiency Emergency Injection Kit

Without so much as a warning a syringe and a 100 mg vial of Hydrocortisone and to be fair, a leaflet, arrived in the post today.

Shouldn’t someone have spoken to me? Showed me how to do it?

Is this the shape of things to come in the NHS?

Nobody has so much as mentioned an Adrenal Crisis to me.

I would welcome any experience/ knowledge that members have about this.

I thought it was a Christmas present. Holy moly. 😐

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OH MY GOODNESS! You're kidding, right??? How freakin ridiculous! 🤯

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I know! It was a shock. I thought it was a present. 🎁😡

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In there any guidance where you should inject. If not get your husband to give it to you in either thigh or stomach as it's easier but you really should have been given a quick lesson on how to do it and where. I would complain next week, it isn't good enough. Debbyx

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She should have been told it was happening

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I totally agree she should have been told. I should be shocked but unfortunately I have stopped being surprised anymore. Debby.

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Of course it arrives on Saturday to allow you all weekend to worry about it.

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why_... one wonders and 100mg is pretty strong!!!!! must be like a epi pen? for anaflaxtic shock from allergies... ?????? I wouldn't mind getting one of those they cost $300 in the states after insurance!!! or did... and i have kids with allergies!

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I’d imagine that’s how much is in the ampule, l used to have Adrenaline & Hydrocortisone ampules for my highly allergic son before Epipens came on the scene.

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I'm no expert on this but would imagine it is 'in case' but you should have been warned - plus you need to know what to look out for and at what stage of 'what' symptoms - and of course it might not be you doing the injecting! Give someone a stern what for on Monday - same old same old arriving on a Saturday. I feel for you - deep breaths! I'm sure someone will be along that has one and can allay your fears until Monday.

I once got a 'Saturday' letter admitting me to hospital on the Monday morning for a mastectomy! All I'd done was have a check up that week as my mum had just been diagnosed with BC - and been given the all clear - so you can imagine that weekend - was it was a mistake...... I was so scared I went into work instead of the hospital and the sister in charge where I worked made the necessary phone calls for me. It was a mistake! No apology or anything. I felt sorry for the person it should have gone to. Imagine if I'd gone in......makes me shudder even now.

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Oh no Telian that must have been horrific. I’m so sorry you had that happen. 😭😭😭😭

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That must have been terrifying!

As far as I can gather an Adrenal crisis will make you feel sick and dizzy and very tired - er who doesn’t? Amongst us I mean.

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It was particularly with Mum.....

Okay and agree - I presume you'll know when to take it seriously....

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Hi Jane

I’ve seen someone in an Adrenaline Crisis (later in hospital described as an Addison’s Crisis) it was extremely frightening, l called 999 & we were on our way to hospital PDQ - where she was given a 100mg of Hydrocortisone which was like a miracle!.......

This happened to my Mum & she was put on Hydrocortisone three times a day for the rest of her life.

She’d been a long time asthmatic on Steroids for many, many years & had recently had a trauma to her leg & the District Nurse chose to debride it causing Mum to basically collapse! She didn’t have the Adrenal capacity to deal with it!

I hope you get to the bottom of it tomorrow & get a good explanation!

You need some spare needles & syringes plus some ampules of sterile water to practice with, an orange is as good as anything, your GP Practice Nurse should be able to guide you & hubby needs to know how to do it too!

It’s an out n out disgrace that it was sent to you so randomly, someone was probably suppose to have rung you l bet!

Let us know what happens next!.........

Angela x

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The orange reminds me of years ago when newly diagnosed diabetics had to practice on one. The needles were long buggers compared to now - excuse my French!

Hope you're well and ready for Christmas. X

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I am glad that I had weeks of innocent excitement. Now it feels a bit like “ shoot me now”. 🤣

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It won't be that bad, it never is, you're in shock at the moment and who knows you might never need to use it. At least you know a little more now and Angela can share her experience, your fears will go once 'you're in charge' and your husband is fully trained. Try not to worry, just thing nice thoughts like your grandchildren arriving on Friday! X

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Thanks that’s useful. I don’t have Addison’s just underperforming Adrenal glands, due to steroid treatment. I seem to have a spare prescription too. I can imagine easily breaking an ampule.

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That’s why it’s good to get some practice, it’s not too bad really, they are slightly weaker at the neck.

When l had my ‘episode’ l believe that’s l was having a ‘Crisis’ or at least the effects of not having enough Steroid but you can’t prove it retrospectively, l’ll never let it happen again that’s for sure!

Life is now at ‘Angela Pace’ l had to put the lovely Terry in his place this morning, he wanted me up to start sorting the last of my boxes 📦 anyway l’ve given him the Christmas tree to sort out to my specifications 🎄😘

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What did it feel like Angela, bearing in mind that I am very suggestible?

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Mine or my Mums?

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Yours really. We can’t know exactly what your mum felt, unless you know from listening to her.

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OK will do but it’ll be a bit later & l think l may even have a note l made on it at the time for the Consultant.

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Thanks Angela, don’t go to any trouble. I guess I’ll find out tomorrow when the clinic is open.

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No l’m happy to tell you Judy I’m the middle of something right now, so catch you later xx

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Thanks Audrey! 😉

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Someone somewhere needs a kick...

It IS an in case scenario - should you develop an adrenal crisis as a result of stress (including infections etc) and become unwell. However, yes, you should receive instruction on how to use it and so should your family as if you are that unwell you probably won't be able to do it safely.

addisons.org.uk/articles.ht...

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That was helpful. It does look like you stick the needle in about an inch before injecting the fluid. That I didn’t know. It’s oddly upsetting this gradual falling to bits. I don’t even feel like asking questions. They just guess, unlike you.I got a copy of a letter from Endo to Rheumie saying that I had an 95% chance of recovering my axis or something. If only it had also said I will send her a kit in the unlikely event etc.

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Lots of people can't face doing it - calling 999 and saying query Addisonian crisis will elicit a quick response usually. Paramedics also carry the necessary.

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Hi Jane. All sounds a bit strange to me.. In case it helps: if you google 'Hydrocortisone / The Pituitary Foundation' there appears to be some helpful info - including how to inject etc. They are UK based (Bristol by the look of it)....

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Thanks Mark . They seem like a vibrant charity. Apparently I can get big hands and feet and a darker complexion with one manifestation. Perhaps I will be able to swim like a seal. How’s Tedski? My Lambski sends her regards and compliments of the season. Did he manage to snag an apartment in Trump Towers Moscow? I know he had ambitions to.

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That's with Addisons disease - when the adrenal glands pack up and you aren't on any pred to put them into hibernation and it does tend to take a long time to develop those symptoms, long periods of slightly too low.

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Wow!! this is quite shocking Jane!! You should absolutely have been told about it and shown how to use it before some idiot sent it out to you!!! It is, obviously, an emergency kit but it is no excuse whatsoever to send it to someone without an explanation.

I worked in the NHS for 40 years and it upsets me so much to see what is happening these days. I have become quite a complainer too I think, because if you don't complain nothing will ever get done. So I would write to wherever your kit came from expressing your displeasure!! :-) Does it say where it came from? GP/ Hospital?

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I agree with altywhite that you do need to complain next week because it isn't at all helpful sending you this at a weekend and if uou were a very anxious person or with no support this could have sent you into a spin. As all the more experienced in pmr have said it's probably for an emergency but most families wouldn't have a clue what to do with it if you were ill, especially if it's a full on syringe and not an epipen. You need to have words with someone. Don't worry about it and get mad and even on Monday. Love Debbyx

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Debby I agree. I would have been really terribley upset. Poor Jane xxx

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It's totally unprofessional to do it like this. Debbyx

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How are you Debby darling? Xxx

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I am doing fine thanks. Just got wierd pain in groin at the moment. Not sure if it's pmr or if I have strained something. Another trip to doctors next week where i seem to spend all my time recently.

How are you feeling? I hope things have started to feel more settled now. You sound a lot better than you did a few weeks ago.

Keep well. Debbyx

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groin pain seems to pop up here a lot. I wonder if it’s a muscle that gets weakened through our illness? Yes get it checked out of course. I am better than I was THANK YOU for supporting me. It’s summer here which helps so much xxxx

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It seems this pmr just keeps on giving. If I get the slightest odd pain that I would normally ignore I instantly wonder if it is GCA even though the odds are against it. I have become mildly paranoid now, which combined with the fact I was slightly mad before makes for an interesting outcome. OH has given in trying to work out what I might over react to next. It doesn't even have to be important for it to send me off on one!!! I am really glad you are feeling better. When your husband posted when you were at your lowest I told OH about it and he has pestered me on a regular basis to see how you are doing. We were very worried. Make sure you look after yourself and only agree with the doctors when you feel it's right for you.

I love winter but as I am a Geordie now living in the south I miss the proper winters we had up north. I love snow but hardly ever see it down here. Mind you i wouldn't mind your summer occasionally.

Take care. Debbyx

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I've just been told that we in the UK are going to have the snowiest winter in 70 years. Not sure how I feel about that...

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Christmas Eve would be perfect. Otherwise it will be out with my Nordic Poles.

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I will.be happy if it does snow. When my kids were only 1 and 3 we went back up north for Christmas and the best bit for the girls was jumping in icy puddles with my mum. Bring o the snow!!!!

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Debby you and your fellow Geordies have the uk’s best accent. The only thing I can say with your accent is “ when the boort comms in”. Lol. I am warmed and touched and humbled that you and OH cared so much when I was flailing about at rock bottom. It was awful. Thank you for caring. Oh and I get paranoid too. Little spot on forehead.....”oh my gosh I’ve got shingles again and it’s going to go into my brain again and give me meningitis....”

Or a headache “ oh no it’s GCA. I need another biopsy which will be negative anyway because of the steroids “. Honestly Debby you are not alone. If you were slightly mad before then that’s probably why we get on so well. I love eccentricity and people who think differently to the mob. Much love to you Debby. Xxxx

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I was speaking to bleary eyed a couple of days ago and mentioned sitting on a large inflatable crocodile in our pool whilst fully dressed drinking a large glass of wine. How I got on the inflatable was not pretty and involved being upside down and back to front on the bloody thing before I was finally able too recline on it and that's when I realised my neighbours had seen the whole embarrassing incident over the only low bit of fencing we have. All I could do was wave as if it was normal for a woman of 55 to be sitting fully clothed but dripping wet on a large blow up animal whilst drinking from the largest glass of wine possible. This is how mad I am and I couldn't even blame the pred at that time. My husband was rolling around in laughter but didn't manage to take photos which I am eternally grateful for. Love Debbyx

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Haha oh my gosh I would pay big money to have seen that. I bet your neighbours thought they were watching some bizarre art house porno!! I have done such nutty things my family just roll their eyes now. Once I went out as passenger in the disgusting battered old open top Triumph Stag Leon keeps in the garage. I wanted so much to look like Audrey Hepburn or Sophia Loren but I had no hat or scrunchie for my hair so I ended up rummaging in the dash and finding a tatty old toilet roll. So I wound toilet paper round and round my head like a mummy. Not pretty.

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I would love to have seen your toilet paper headwear and would probably been rolling on the floor. It doesn't take much to make me giggle! My husband would love a low open top car but i have been saved from that horror due to he can't get down to low seats since he broke his back. Silver lining to everything!! I did offer blearyeyed a go in the pool but did say i wouldnt be any help as I would be laughing too much.

My poor neighbours have been well and truly initiated into my madness. I don't mean to be mad but things just happen. To be honest when I was in court with all sorts of serious things going on i could still be relied upon for somethung silly to happen. A week after the pool incident we had a great long plastic sheeting slide going up the garden with our youngest daughter and son in law and grandson sliding along it whilst screaming with laughter even after they got carried away and hit the decking. The crocodile was once again a part of the chaos. The neighbours were once again found at the low fence watching the madness!! Before summer I will be replacing the low panel. I am glad you are daft as well because it makes life more fun. Debbyxx

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Yes. The Sheffield Endocrinologist Office and there is a leaflet and a contact number. Just nothing personal to me. I have never seen this doctor. Nobody has corresponded with me, just each other Endo, Rheumie, GP. Nobody will ever admit that this is wrong, you know how it is. I think if you give yourself the injection and it is not necessary, it doesn’t harm you. It only stays in the system for a few hours and the next step is hospital anyway. To languish in a corridor, I bet. It is a sad and deliberate state of affairs, totally caused for ideological reasons by the present Administration ( govt.).

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I can hardly believe what you are writing! How can anyone administering such a package not do it face to face with discussion, advice and your agreement. I would be tempted to return it in original packaging.....it may have been wrongly addressed.

Is this another NHS maladministration?

Valerie

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It’s dreadful. Not many people could handle this with equilibrium xxx

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I agree dc, this is a pretty monumental error on someone's part.Debby

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Looks like they may be the culprits. Debbyx

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Yes. The Endocrinologist is Miguel Dubono I think. His nurses were instructed to send a “sick days” leaflet. It was the syringe and ampules that were a surprise. “Talking to the patient” is the bit that’s missing. For those that have this kit. Do you refrigerate it? How toddler friendly 😫. X

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If it requires refrigeration (which I doubt if it appeared in the post) it will say somewhere on the pack, together with an expiry date (note that). Someone has said that their h/c is by the phone - which suggests it doesn't need to be cold.

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Do you think someone was told to send you a leaflet and cocked up and sent you the syringe kit too?

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I think the three parties involved all thought the other one had dealt with the mere patient, perhaps. Not sure who to complain to.

GP, Rheumatologist or Endocrinologist. The Endo has suggested a rapid reduction to 3 mgs then sends a life saving kit. The Rheumie standing in for Sarah knows that would be really painful. The GP is out of his comfort zone. Who is in charge?

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It's terrible and very unethical!! In my opinion anyway!! PMRpro's link is to hospital services in which case you could try writing to their PALS department. As you say, they probably won't admit they are wrong but it may make you feel better!!! I still think instruction is necessary to self administer an injection though. Maybe they think everyone knows how to do it these days because of all the medical and hospital programmes on TV!! :-) x

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TV doesn't usually manage to get CPR right...

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Oh that drives me crazy!!! haha!! They're supposed to have experts on hand but you're right.....they don't get it right!! :-)

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Four of us were sitting watching the remake of Casino Royale and it got to the CPR bit - and 3 of us shouted "wrong speed!!!!"...

But it's the person who was being bashed hell out of half an hour ago sitting up and eating lunch that really irritates me. No broken ribs, bruises, no' weel at all ...

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Haha...I know what you mean!! I love Grey's Anatomy and they generally are very good....but not always!! It's about the only 'medical' programme I can watch!! :0(

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I worked as a senior member of an nhs legal team for 15 and i have voiced my opinion on going through PALS before as they actually have no authority to achieve anything. Go straight to chief execs office or the legal team if you want answers. Debbyx

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Bxxxxy HxxL SJ! What a shock! You must be feeling a welter of emotions, shock, anger, frustration as you have to wait until Monday before you can vent all this to whoever prescribed and sent the offending article! This is another link - in case you haven't come across it from the Society of endocrinologists........www.endocrinology.org/adrenal-crisis. Oh how I would love to be a fly on the wall when you vent your wrath!! Good Luck and let us know how this cock up happened............

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Both my Endo and my GP wanted me to learn how to self-inject, when I was diagnosed Addison's last year. I refused. I know, in an emergency, I would not have the presence of mind to inject my thigh. I have 2 ampoules Hydrocortisone, next to my phone, and am on the emergency 111 list. If a paramedic needs to come out, they can just bring the needle/other, i.o. me going to hospital.I agree, SJ, it must have been a shock...maybe kit intended for another patient?

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I think it's horrifying that they put a syringe in the post. What if it had gone to the wrong address, been opened by a nosy child...

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Oh my gosh I never even considered that!!!

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Thank you for your thoughts advice. I have been diagnosed as Adrenaline deficient, but haven’t been seen at all. OH says he will rise to the challenge but 100 mgs!!!

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O am sure he will manage if he needs to.x

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From what I've read that's the standard initial dose......

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Hydrocortisone is a much higher dose than pred - factor of 4 I think off the top of my head. It's only 25mgs pred!

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That is also a calming piece of intelligence. Thank you.

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Jane it is a terrible thing to happen. I have an emergency sumatriptan epi pen since I had meningitis but I don’t have the knowledge or confidence to use it. Why on earth did they send it? Very bad. Please don’t let it spoil your happy time xxxx

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Shocker SJ. Hopefully there was a contact number on the leaflet to direct you for more information.

Beyond the product and worry about proper administration, there is the distressing thought that it may need to be utilized one day. That, in and of itself, puts your condition front and centre. It’s not always easy to be reminded, especially in such a stark way.

I have injected liquid vitamin B12 before, and it was one of the times I was grateful for thick, plump thighs....somehow made it easier to give myself a shot. I think you can practice on an orange if need be (seems my grandpa did when he was diagnosed with diabetes).

I’m also reminded that I have yet to get a bracelet or something to indicate I am on prednisone. Currently I don’t have any sort of card (was never given one).

Hope you get it all sorted out, and once again so sorry you had to receive this parcel so abruptly without forewarning. Take good care.

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Is this being sent to all patients with a GCA diagnosis in your country?

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I really hope not Leeleep. What about people who aren’t mentally competent and who don’t have a forum like this to advise?

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My God Jane. That sounds very scary.

Does the leaflet explain how to administer the injection?

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Being a trained up member of this self sufficient group I have now watched a number of reputable You tube videos for precisely Hydrocortisone shots.

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How odd .

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Wow what is happening

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Yikes, that’s a bit unnerving!

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Hi Jane

Seems very odd? What were your results of your Synacthen Test, did they mention anything about follow up or retesting?

Seems very odd?

Angela x

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How scary! And how disappointing: everyone loves a present!

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This makes me rather suspicious! Are you sure this is from the NHS?

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It looks like the real deal and the Endo named exists.

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Hmm no clue. I live in the USA. No one ever mentioned this to me.

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Nor me, that’s kind of my point.

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You mean they just sent it to you without your knowledge?

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I had undergone a short Synacthen Test on the capability of my Adrenal glands to produce sufficient Cortisol. I was found to be deficient. None of the doctors have spoken directly to me, although I was copied into their correspondence with each other ( GP, Endo, Rheumie). The emergency syringe kit was a complete surprise.

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Jane why exactly was that test ordered? If Adrenals can’t produce cortisol this could be the culprit of us having PMR?? I might ask my doctor to order one for me. Thank you so much for your reply.

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The steroids produce cortisol for us so that the adrenal glands go to sleep until we get to a low enough dose of pred when they have to leap into action again. It is not the PMR that is causing the adrenal glands to go to sleep. When you get down to around 5mg of pred you can have a Synacthen test to see if the adrenal glands are starting to wake up again OK.

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ok - now I understand. I will ask my rheumatologist about this as well. Thanks a bunch. : )

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Good luck 😷💉

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Fatigue really. Steroid treatment makes our own Adrenal glands produce less or stop producing Cortisol altogether. The hope is that they start working again as our Pred dose gets lower. Sometimes they don’t or are slow to get going.

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I would just wait until the morning and contact endo, at the hospital where someone will sort it for you and you can tell them that you will need expert tuition as soon as... We have had a few problems but they are always happy to help get them sorted. Seems someone may have jumped the gun. Take care and I hope you never need it. Jen

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Thanks! That’s the plan. It really has helped hearing everybody’s view this weekend though. I am grateful as always.

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DONT do it - a doctor must give you exact directions - Go to A&E failing all else - or a pharmacy and talk to the pharmacist!!!

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Hi SheffieldJane I am so sorry you have had such a shocking thing happen to you and I hope it all proves to be an awful mistake. If you do end up needing any further information about cortisone injections the Addison's (don't panic) Disease Self Help Group has a very good online support group with information on primary adrenal issues (Addison's) and secondary adrenal issues (eg caused by steroid use). They have so much information eg you don't need to refrigerate the hydrocortisone. I was diagnosed with Addison's a few months ag and ironically it was through the group I learned I should have been issued with an emergency injection kit - neither my GP or endo had bothered!. After you've shouted at whoever is responsible for all this do get in touch if you have any more questions. All the best x

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What a lovely offer of help. Make sure you bollock the idiots as well. Debbyx

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Hi Yellowbluebell thank you so much. I wish I'd had the energy to bollock them! They always get you when you're at your lowest don't they. All my friends are queueing up to do it for me! Xx

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That's the trouble with seeing doctors, we don't go to them when we are well and when we are ill we havnt the energy to fight the system. Sometimes you need take a friend or relative who is not afraid to fight your corner. After far too many years as a barrister and just as many in the nhs's legal department I am the loud friend everyone takes with them!!! The doctors just want you out asap to get through their lists. Remember to try and take someone with you next time if you can. Take care. Debby

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Thanks Deecam! That is useful stuff. This group has held my hand for well over 2 years, it’s a lifesaver, sometimes literally.

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Hi Jane,

Sorry to hear of your ongoing challenges. When I complained of feeling tired after tapering my daily steroid dose to 2.0 mg, my physician ordered a battery of tests which included morning cortisol level. This test was performed one hour after awakening, and indicated my peak production was 10 mcg/dl. Although this was on the low end of the normal range, (10--20 mcg/dl), it indicated adrenal insufficiency was not the likely cause of my fatigue. I assume your doctor performed this, or an ACTH Stimulation test to assess your adrenal function. Re: Injections, my PMR was initially treated with a 2 ml dose of depo-medrol, which my dear wife deposited into my caboose on a weekly basis. Despite the fact that she learned to painlessly insert the needle, I always said "Ouch" for effect, and got two friendly pats after she applied the band-aid. While it seems unlikely you will need an injection, you can always buy sterile saline and allow a caregiver to learn how to administer it from an online nursing video. Surprisingly, it's not such a big deal!

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Thank you for writing, that is reassuring. My kit is just for emergencies though but my husband feels fine about doing the honours. He is often away though, so I must skill up too.

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Hi Jane

You will need some help to be able to inject my practice nurse has shown me how to do it. It needs to be injected into the muscle in the top of the leg. You only need to go into the muscle so not far. A crisis is not good and your body feels extremely weak and you get so you can’t move at all. I get them if I have a stomach upset. If I feel one coming on it’s do injection and call for an ambulance or get to A&E ASAP. When you get there tell them you need a steroid injection and fluids. It’s scare but manageable. The Addison’s society on line is very informative so go on there website. Good luck

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How bad were your adrenals? I know you mentioned they were low - but didn't realise it was that bad to have a "crisis" kit! Under what circumstances would you use that? Would you know the symptoms if you were that bad? Seems bazaar!!!

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Anyone on pred is potentially at risk if exposed to severe stress when what should happen is a massive surge of cortisol. That's why we are meant to carry a card saying we are long term steroid patients.

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right - gosh the docs never say anything about these things. At least it was never mentioned to me. Even a card. Thank you.

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About 30 units below the minimum they look for. I don’t know what the units are called. My baseline was 296 after the stimulating hormone I think it was 336 they would actually like to see you get to 500 I think. At least they worked a bit. I may have remembered the numbers wrongly. It wasn’t good enough though.

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Thank you.

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I think in an Adrenal crisis you would be in a state of collapse and it would be obvious. I’d probably ring for an Ambulance whilst fumbling with the syringe.

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