Hi has anyone else with lupus been diagnosed with Adrenal Insufficiency? I understand it can be the result of long term steroid medication.
Adrenal insufficiency: Hi has anyone else with... - LUPUS UK
Yes. It developed after about 2 years of steroid use. Despite the very typical symptoms, my rheumy was reluctant to believe it. I did a home saliva cortisol test and after showing him the result, I got a short synacthen test, which showed adrenal insuffciency.
Since then, I have had a couple of episodes where I've been ill enough to go to A&E. My experience, and that of others I know with the same issue, is that A&E cannot be relied upon to recognise adrenal crisis, or to treat it promptly, so I always hang onto my personal supply of hydrocortisone (that's in addition to the emergency IM dose we need to get from the GP) and take it when I feel the symptoms kicking in.
I've also got a medic alert wristband, which you can get from the Addisons Disease Support Group. x
Thank you, I'm just trying to get my head around it and understand it, if I feel a bit low of energy, and take an extra dose of steroid, it seems to make me feel better, if only I had known this maybe I would not have felt so poorly for so long xx
Hi whisperitCan I ask..what are the symptoms of adrenal insufficiency?
Good to see u on the forum 👍🌈😽😽xx
The symptoms that I had - which are pretty typical - were that I was waking every morning with a splitting headache, nausea, shakiness, and feeling so weak that I struggled to even lift my head from the pillow. I mean not just the usual lupus fatigue (which as we all know is BAD) but feeling like every scrap of energy had been sucked out of my body.These symptoms persisted - though with less intensity - even after I'd taken my daily pred dose.
It's quite helpful to know the normal cortisol cycle to understand what is happening. Usually, our adrenals produce cortisol on a daily cycle. They switch to maximum in the early morning, in preparation for waking up. So the peak level is around your getting up time. During the day, they slowly decrease, although there are small boosts around mid-day and early evening.
When you take steroids, they mimic cortisol and so your body starts to think it doesnt need to be producing so much. After a longer period, you natural cortisol levels fall, but you dont notice it much - except in the early morning - because the steroids are doing a very similar job. After a long time, or if you are unlucky, your adrenal decide not to bother at all, or become so sluggish that you can't produce natural cortisol even when it is urgently required. You get "adrenal insufficiency", or even adrenal failure. There are longer term symptoms of adrenal insufficiency/failure, but they aren't so obvious as the acute ones.
Sorry to do a lecture, but maybe others will appreciate the info. Do visit the ADSG site for more reliable info. addisonsdisease.org.uk/
Perfect description, I couldn't describe how bad my headaches are, and would often wake up early hours of the morning, be being quite sick, was putting them down to bad migraine, but nothing would touch them, so lucky I never went into a serious adrenal crisis. Xx
Sorry wake up in the early hours of the morning with these headaches and often very sick, hope that makes more sense 🤣
worth discussing with your docs then x
I have now been diagnosed with Adrenal Insufficiency, it's a little scary isn't it.
oh, sorry, i didn't realise you'd already been diagnosed. Yes, this whole experience forces you to work out ways of coping with uncertainty and fear x
No apology required 😃, yes still trying to get things straight in my head, I live alone and a little afraid of something happening, silly I know, but it's taken so long for them to get the diagnosis correct, kept telling me the headache were bad migraines, all I can thing at the moment, is their Blaise stride could have made me very seriously ill or even worse. Why don't these people realise that lupus and the medication we as sufferers need can and often does lead to other more serious issues, it's a worry, some else we shouldn't have to worry about. Moan over 😃😃 thank you
If you would like to come over to the PMRGCAuk forum, we have a great deal of stuff about it - there is an FAQs section with posts and links as well as a post about the new steroid warning card
In the FAQs there is an Adrenals post, as well as one on Sick Day Rules for adrenal insufficiency patients and the Steroid card, all in alphabetical order.
We are all on long term pred, no other option for management, and actually the insufficiency sets in after just a few months in some people because the HPA axis that governs cortisol production knows there is plenty of steroid present and so the response when you need a boost for an emergency is blunted. That's why you can feel so wobbly when you are unwell or have a shock of any sort. There are lots of us over there to answer questions you might have.
I also suffer from adrenal insufficiency and started when I was first diagnosed with SLE and started on steroids, as they are known to cause this problem. At first they would put me on high dose of steroids then brought them down significantly and used to end up in hospital with adrenal crisis. And when they did the cortisol test they found out that it was very low and now I am under the endocrinologist who sees me and monitor the levels as well. He told me that cortisol is usually produced early in the morning but due to steroids it doesn't produce sufficient enough and becomes inactive, thinking the steroids are doing the job and since my steroids dose is so low it's not sufficient enough to last me the whole day so I get retired throughout the day.
Thank you for your reply, and that exactly what happens to me, I have been known to drive my car home from work with the roof down in the middle of winter to keep me awake 🤣 not good. I also think I have had as couple of adrenal crisis and end up in hospital, although I was very poorly for a few days at they would always put it down to a non nasty virus, until now. But now I no I am aware of the early signs, so hopefully can manage it.
I too was hospitalised for 5 nights over Easter this year.. with what I think was an adrenal crisis.. although I was treated for a “ virus” !😏my problem is I now have Cushings from high dose steroids, and weight gain , so I’m completely off all steroids... just Hydroxy is keeping me going so far so good 😊... fatigue is horrid tho ... stay safe this 🥵 hot sunny weekend everyone ..
Sorry to hear of your issues, I've been told I will never come off steroids, but been lucky as I am losing weight, strange I no, but I think that is also symptomatic of adrenal insufficiency. Take care sweetheart, I know exactly were you are coming from, bless you xx
Yes, I have secondary AI. Diagnosed a few years ago after being on high doses of steroids for a few years. They don't really know why some get it and others don't, but age and dose seem to play a part for many.
I don't find it impacts my day to day life too much but I do have to be careful when I get infections etc. Sick day rules and your injections are really important. I've only ever had one crisis but it nearly cost me my life. Some people never have one.
All the best x
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