Steroid dependent and the need to be issued with an emergency injection

[kellykell]

Hope everyone is doing okay!

Is anyone well clued up on medical guidelines re emergency hydrocortisone injections, for people who are steroid dependent for whatever reason? I've seen this stated on the Addisons support group leaflets, but is there any Nice guidelines or something similar that state for anyone who is steroid dependent, for whatever reason?

From what I understand when taking hc for more than 3 months there is a need to carry an emergency injection of hc , have I understood this correctly? My GP still won't issue one although I'm off to work in rural North Wales in the mountains for a few weeks. I'm on hc 20 mg a day for 6 months,diagnosed privately for adrenal insufficiency by saliva testing . My cd 57 count was -8 , the range is 130 to 300! So my immune system is very low.I have my meds bought for me from abroad as they are OTC so no need for a script, licensed from a reputable pharmaceutical company in that country. The GP says she doesn't have the authority to give an emergency injection and to wait for an Endro appointment, this was a month ago , still waiting for an appointment date! Yes I wear a medi alert , steroid dependent silicon bracelet, carry my blue steroid card and have a seat belt alert too. I take 100 mg of hc tables with me every where!

So I'm wanting to fight this as I have strength in me to do so for others who are also struggling with wrong diagnosis and miss treatment but I m not finding the right guidelines or evidence to proceed.

That's why I'm attempting to find something that states any one using Hc needs to be issued with an emergency injection. So weather it's through a diagnosed condition like Addisons or adrenal insufficiency or it's just through a person taking hc through choice or because they just do! If I can find some info I am happy to take action against this health practice and hopefully help others to be able to do the same. Many GP and Endro s are withholding this emergency injection and that's from their own patients that have been diagnosed through the NHS system. Things need to change it's not good enough to treat unwell people like this , it's hard enough living with this disease without all the hassle that the doctors often give us.

Many thanks for your help.

[marram]

I had a friend who had to have hc injections for Addisons and went into hospital for spinal surgery. The medical and nursing staff refused to administer them, or allow her husband to do so, claiming they did not deem them important. She almost died post surgery, nothing in the tank. In the end her husband was doing it secretly during his visits. What sh*t training they must have. They were a prescribed drug and they refused to administer!

[ANAPHAXETON]

Just signed up for this post. I was given HC for hypopituitarism and addisons and was told "if you get diarrhoea or sick you must have the injection" as you'll be aware. Anyway, my GP refused to prescribe it when I ended up with diarrhoea (which has lasted three weeks now-I'm not absorbing the oral properly) and I'd sit in A&E feeling like death for several hours waiting for it. I went A&E six times and only once they'd inject me.

Yesterday I went to see my endo and straight away she gave me a prescription for the Injection to add to my repeat prescription etc. She was angry knowing how dangerous is it to not have it to hand and said I'm very very lucky nothing fatal happened

Go see your endo get a prescription and get them to phone your doctor to give them abuse!

[marram in reply to ANAPHAXETON]

Ah, yes, I recall my friend had had a pituitary tumour removed and the pituitary was squashed or something, so she likely would have had hypopitiutarism too, I suspect, wouldn't she?

How can medical and nursing staff NOT be made fully aware of such conditions?

[kellykell in reply to ANAPHAXETON]

Sorry to hear your story, this treatment is so unexceptable.

That's the problem , I don't have an Endro yet! My experience when I did have one years ago was "what a waste of my time"!

So that's why I'm looking for guideline statements to take this further. Any one who is steroid dependant has a need for an emergency injection. This can be life saving. This need should be respected.

Our moto where I work is "Where change happens"...change needs to happen within the system as too many people are being mistreated.

[MrsRaven in reply to kellykell]

Maybe I'm just being cynical, but sometimes I think they wish we'd just die.

[Bailey611]

Hi Kellykell my Husband has a terminal illness he is dependent on steroids he's dose is 25mg everytime we try to cut him down in dose he crashes a result from the Prednisolone has given him ostioparosis he just had 3 months of liver treatment which cured he's liver he has arthritis in he's neck as well prednisolone is the evilist drug but it's a catch 22 he cannot breath with out it they couldn't operate on he's neck because of the ostioparosis he's bones are to weak we asked for a cortisone shot to relieve the pain and we were told he's allowed 2 only he's already had one which hurt him more for a fair while before it kicked in the drs have put him on the highest of everything and everything has side effects Prednisolone is the worst one the Drs know that but still when he gets really sick they give him 100 to 200 mg in a injection I'm praying something else will come up instead to help him I seriously don't know the answer he has multiple problems and all they can do is treat him with what ever comes up so really scary I hope you find an answer I just wanted to make you aware of the side effects

[twinkleyt]

I had prednisalone to treat a life-threatening allergic swollen tongue. In A&E I was given an intravenous injection of it and antihistamine and had to wait 4 hours for the tongue to return to normal.

I was sent home with the steroids in tablet form and had to take 40mg daily for a week after with more antihistamine.

This happened again 2years later but since then had no more recurrances. . I felt really good on the steroids.

I am so sorry to hear about your husband. I lost mine to cancer 20 years ago after a 3 year battle.

[kellykell]

Thanks for all your input

I ve got it sorted now and have my own emergency injection kit for the just in case!