How to cope with accidents when immune suppressed by steroids?

[cuttysark]

Hi Folks,

Sorry this will be a mini essay!!!

I cut my finger badly last week, stabbed while taking the plastic film off a cucumber. Anyway just after it I was very unwell from what seemed like a mini adrenal crisis. I went upstairs to get my shoes on to go to A&E as the wound was very deep, and suddenly I was on the floor absolutely pouring rivulets of sweat, feeling violently sick and very faint. I knew I needed hydrocortisone as from the depth of my mind I remembered the endocrinologist telling me to increase the steroids if I had an accident but I could not move at all. I managed to shout for my husband who rushed upstairs and gave me hydrocortisone and Lucozade. I knew my blood sugar would drop at the same time. After fifteen minutes I was well enough to go to the hospital and get my hand patched up.

I didn't breath a word of my bad turn to them as I knew they would do bloods which would have normalised by then anyway and I would be ages waiting . The nex day I could barely stand until I took an extra 10mg hydrocortisone, I reduced it to 5mg the next three days and the 2mg I feel now it has just stabilised a whole week later.

I am on 120mg depot Medrol injections every three to four months and this episode did not feel like just minor shock but more serious.

I saw my GP today who is always useless and she just shrugged and said if I had just stayed lying down I would have improved anyway with no extra steroid. When I told her I couldn't stand the next day she changed her tune and told me to tell the Rheumatologist next time.

I am just alarmed at how bad I was so quickly and worry if I was walking the dog on the beach ,which is often deserted , and I broke my ankle or fell I could lie there forever till I might be found. I do believe if I had not got the hydrocortisone when I did I would have eventually lost consciousness . It was far worse than just a little fainting spell as the GP was suggesting.

I know about six years ago before I began regular steroids I had some adrenal suppression and was put on a small amount of hydrocortisone a day but since then as I am on much more I haven't really thought about it.

It was very alarming and made me wonder if we are actually all ,who are on steroids ,in danger of an adrenal crisis if we were in an accident.

It happened once before during an angiogram and my blood pressure dropped so much they had to give me atropine .

I don't know if I am unusual or are we all in danger of this by belong on steroids ?

Just rather scarey if you are on your own when it happens, as you can't function to actually help yourself by getting more steroid.

Interested to hear if anyone has had anything similar.

C X

[flow4]

This is very interesting, cuttysark. I don't experience such a dramatic response, and I'm not on steroids, but I do get something similar on a smaller scale when I get a sudden shock. Along with a massive adrenaline rush I get a sudden blood sugar and blood pressure drop, and it makes me feel very ill and vulnerable. I had never thought of it as a sort of mini adrenal crisis, but I do have some other adrenal issues, and I bet that's what it is.

I think it is possible that there is something else going too that is making your reaction more extreme. Hydrocortisone is known to affect blood sugar and gut bacteria, and to increase blood pressure, and is contra-indicated if you have high blood pressure, are diabetic or have a systemic fungal infection. It might be worth checking for these things, and for interactions with other drugs...

Meanwhile, a thought... My brother is diabetic (T1) and always carries sucrose with him. I think if I were you, and had such a dramatic and disabling reaction, I would probably start carrying sucrose AND hydrocortisone tablets. And maybe consider one of those Med Alert tags, too...

[cuttysark in reply to flow4]

Hi Flow,

Great reply with good suggestions. I was thinking myself it would be a good idea to always carry dextrose glucose tablets but yes I better carry some hydrocortisone too.

Like you throughout my life, and I am now 62, I always have an over the top reaction to any shock or accident with a huge adrenaline rush. I think maybe since I have been on steroids for four years the adrenal system is suppressed so that is why I now am worse with it.

Interestingly you mention there might be something else going on. As part of my autoimmune disease( Sjogrens and perhaps Lupus) I have biliary and pancreatic inflammation .I know they do check me for diabetes evry so often so maybe there is a general instability in many of my hormonal systems causing this reaction.

I don't have high blood pressure but am on a beta blocker for heart arrhythmia.

Meantime I will be safe by always having the two things with me and will speak to my Rheumy about it when I next see him. Fortunately he is excellent!

A Med alert tag would be good too. X

[EOLHPC]

Am v sorry you've been going through all this bad stuff, cuttysark 😟. But am also V glad you've asked your question...because you & flow are helping me a lot. I have a similar reaction to accidents (and also to severe onset spasms etc) and I've been told: sit down & bend over with your head between your knees etc. This has been happening since way before my prescription immunosuppressives. And I continue to have this tendency since starting immunosuppression. I too have wondered how I'd cope if I were on my own & things got suddenly worse. As I understand it, I too have "something else going on" involved in this: ortho static intolerance is one such 'something'....but am fairly certain there is more to this in my case. So, thanks & take care xo

[cuttysark]

Hi BC,

Glad this topic was of interest to you as well. I think there are so many of our body systems out of kilter and that is what is so very frustrating and alarming for us in trying to live with , and make sense of it all.

It is all very well for the GP to shrug and dismiss but we are trying to live some kind of life with this from day to day.

I am so blessed that I have a good Rheumy who I know will at least show interest and follow it up.

Like you I have various MS like neuro symptoms that they are closely watching but this time I do think it was some kind of endocrine reaction.

All the best, X

[EOLHPC in reply to cuttysark]

Am glad you're here. You're contributions always help me a lot!👏👍😘

[helixhelix]

If you're on long term steroids it's usually recommended that you carry a card or wear a medi-alert bracelet just in case you're in a car accident for example, so they'll know to watch for signs of an adrenal crisis. I think this is also in the patient information leaflet.

[cuttysark]

Yes I have a blue steroid card but keep it in my purse in my handbag and worry when I am out with the dog I have nothing on me.

Hopefully the dog would save my life as in the "Lassie" films !!!! But you are right that it would be much safer to have a medi alert bracelet as well!