I'm hoping someone help can help me understand - I'm feeling pretty scared right now.
I've been on long-term steroids (Pred) for years. Things are finally getting better with the Omalizumab so I've been weaning the Pred. Got down to 5mg from 40mg, my consultant wanted me to have a Synacthen test to check everything was okay to come off the Pred, but made out it was just a formality.
I got the results of my synacthen test today - they show my adrenals didn't respond at all, i.e. no function. The endocrinologist went on about adrenal failure and how it could be life-threatening, but she spoke really bad English and used lots of long medical words and I didn't understand much at all of what she was saying, particularly as I found it difficult to take anything in after she scared me with talking about it being 'life-threatening'.
She said I need to take Hydrocortisone but I didn't understand the treatment plan.
I'm seeing my GP next week and I'm going to see if she can help me understand then, but if anyone can help me understand and feel a little less scared now, I'd appreciate it.
What does this diagnosis mean?
Is it reversible?
What is the treatment?
Does Hydrocortisone have the same side effects as Pred, i.e. weight gain, brittle bones, etc.?
Does Hydrocortisone help the asthma or will I still need to take Pred when the asthma deteriorates? Can I take then together?
Sorry about all the questions, I'm feeling pretty confused and scared.
Adrenal function means you wont be able to produce your own steriods, if still on pred i dont think need hydro aswell. But before operations and that need extra. So unfortunatly will be on steriods for life. Unfortunatly it isnt reversable, the usual dose of pred that replaces natural steriods is 5mg. When it comes to the whole hydro thing I would assume can take either and yes would still need to up if it needed. As far as Im aware just means wont be able to not take them and have to make sure you dotn go into crisis wikiapedia is good for info!
hi hun
I cant type it fully but dont worry about it. I know its hard i have been there with my mum only in the last year it could be one of a few things all are treatable. The worry wont help you as it raises the adrenaline.
hi hun
I cant type it fully but dont worry about it. I know its hard i have been there with my mum only in the last year it could be one of a few things all are treatable. The worry wont help you as it raises the adrenaline.
unfortuantely, side effect of longterm pred use is adrenal malfunction/ insufficenty, sorry ratty you have had this diagnosis made to you
hydrocortisone is the steroid they normally give you iv when u go into hosp for an acute attack if you cant take pred or need to give the steroid to you quickly.
however you can also take it in oral form long term, instead of pred. not sure bout all the side effects, but the side effects of hydrocortisone orally, are much less than pred if i am not mistaken. and they will monitor you closely, for side effects as well as your adrenal function and other tests also.
yu will ovbviously need to take it regularly, and if you start vomiting, unable to tolerate meds orally, need to have the hydrocortisone given to you iv, but the docs shoud explain that to you more thoroghly - incase i am mistaken and that is for anoter condition that you take hydrocort for... - i think its called addisons ??
if it's not one thing, it's another ini, ratty, hey?!
glad to hear your responding to omalivizimub, supposed to be starting mine next week, but my asthma nurse has other ideas, so not sure :S hmm....
take care xxx
I have been on steroids 80 days and down to 2mg. I feel so low and tearful and washed out and time of the month and got a nasty cold virus.lip broke out and sore throat and coughing rubish up and dont feel my body has anything to fight it off with. ive herd about the same problem coming of steroids and sometimes a injection given. Just know in out of sorts at the moment x
Hey Ratty,
Really sorry to hear about this :(. It's horrible when one thing ends up causing another. I don't actually know very much about this except that it basically means that your body has stopped producing its own steroids. I thought I'd tell you though that I'm pretty sure that the dose for this is actually quite low compared with the amount of Pred you'd go on for an exacerbation, although obviously it will be more long term. The good news is, I'd should think that with the dose not being too bad, the side effects shouldn't be too awful, especially if you've coped on long-term steroids.
Glad to hear the omalizumab is working though. That's really good news.
Ratty. Just been reading up on it and hope your sorted soon with treatment xxx
Thanks everyone for your replies. I did a bit of scaring myself by Googling last night. Sometimes Google definitely isn't your friend! It's clearly really playing on my mind - put my washing up away in the fridge this morning, then got off the bus at completely the wrong stop :S
I'm seeing my GP next week so hopefully she can help me and answer some questions, and my respiratory team might be able to help too. I'm so worried about the side-effects of long term steroids; I've had such problems from Pred, particularly with my bones which has restricted me in some ways more than the asthma and I'm so worried/tearful at the prospect of these being forever issues.
I have just had the same news today. Not been on pred since Dec 2010 which is really good for me. Been feeling awful though, like I've
Got a permanent hangover. No energy, craving salt, dizzy spells. Cons did a
short synacthen test for my adrenals. They are not working at all. On 10 mg hydrocortisone twice a day to he increased if I get an infection or injury or need surgery etc. All a bit rubbish but in a way I'm relieved that I now know why I have been feeling so rough. Hoping now I'm on treatment I will start to feel a bit better.
Hi, I'm new to this forum but not to asthma.
Both of my kids are asthmatic and at one point my son developed adrenal suppression. We had no idea he had it until he seizured when he had a routine stomach bug, was taken into hopsital where he got worse before he got better. He was given both a short then a long synacthen test where his adrenal output was found to be not functioning. His was linked to high doses of inhaled steroid. It was a hairy time and for a while he wore a medic alert as he was too young to be able to tell people what he had. His did eventually resolve once we were able to manage his asthma better. I worry about this condition though as my daughter has had a rough time lately with her asthma, she was tested for adrenal function when my boy had his adrenal function and hers was found to be at the very low end of normal.
He had to be admitted when he had any bug that involved vomitting or diarrhoea or if he had any form of major physical stress or shock (so if for example he's been in a car accident they would've admitted him for a while to put him on a drip).
His was reversible but his diagnosis was adrenal suppression and not failure.
Thanks both for your comments/experiences. There's a few things that stood out, I hope you don't mind me asking about them.
Is the salt craving normal? I used to really not like salt at all - my mum would actually have to not add it to the cooking then she and my sister would coat their meals and I'd eat them bland. I've always only had vinegar on my chips, and when I was a kid my fav. crisps were the ones with the blue packet of salt - which I took out and gave away - as I liked just the plain crisps. Recently however, I've noticed a massive craving for salty things, and it's taken over my chocolate craving!! I'll be in the supermarket and 'have' to buy a bag of ready salted crisps and I've even tried different ones to find which are saltiest!!! I'm sprinkling salt on my food too, which I've never done. I thought my tastes were just changing as I got older so would be really interested to know if this is related.
The second thing was someone saying their son had a seizure - I was wondering if this was found to be related to the adrenal issue, because I've been having seizures and it's being looked into but one thing they haven't thought about is whether there's a link, so I might bring this up.
I haven't started on the hydrocortisone yet and both I and my GP are concerned - all those symptoms mentioned, feeling hungover etc. pretty much describes what's become my normal. My asthma consultant and endocrinologist are in the same hospital but don't seem to be able to talk to each other, and they need to decide what the plan is with regards hydro or pred and what happens when I need pred for my asthma if taking hydro. I'm seeing my GP on Wednesday and she's giving me a letter to take to my asthma cons on Thurs to basically say sort it (politely of course!).
ratty
if your started on hydrocortisone for the adrenal insufficency you wont be put on prednisolone, you will be treated with the hydrocortisone instead. works the same way.
oral tablets. then when in costa you stay on tablets or if need be go onto iv form and as mentioned if vomiting and/or diarrhoea :S then also you will be given iv also.
from what i have seen at work prevously with addisons (when body produces no steroids - hydrocortisone, so given oral form instead) children do have seizures and also from what i have read and been told its the same with adults and a craving for salt is indeed normal, as well as feeling lethargic.
did you know - interesting fact - John f kennedy had adrenal insufficiency?!
hopefully once prof and endocrinologist work together and talk! they can start you on treatment and manage your symptoms and you will improve quickly
xxx
Ratty, yes my son did have a craving for salt and yes the seizure was related to the adrenal supression. I do also remember being told that the outlook for him was good so long as we maintained his cortisol levels well.
Hi Ratty, hope you get some treatment sorted out soon. Apparently the salt craving is common. My resp cons tested my thyroid and glucose and only did the adrenal test coz I mentioned the salt. He even said he thought the test would be fine but as I mentioned the salt craving he would test it. We were both surprised when it came back as positive for adrenal insufficiency.
The doc said to me that I need 10mg hydrocortisone twice a day and then they will re-test in a few months and adjust it the dose accordingly. I nthen eed 100mg hydrocortisone during illness or surgery (not asthma related) and during asthma exacerbations I will take prednisolone as normal for the duration of the asthma exacerbation. Hope this helps. Can't wait to see if it makes me feel better as I have been feelin soooo rough for the last couple of months.
Unfortunately I now need another flippin medic alert bracelet as I need to get this engraved on it as it is important information for an emergency.
Hope u get things sorted soon. It's not good that they are leaving it so long. I only got tested on Thurs and by yesterday evening I had received several phone calls, beed advised to go the GP surgery, been issued with a prescription for hydrocortisone and am now on my daily dose. I take my hat off to them they really did sort it out quickly and efficiently.
Take care
xxxxx
Sorry to but in but have been reading this thread with great interest -I crave salty stuff alot of the time, ritz crackers and salty cheese such as hallumi and salt on my food, this is new to me. I have low potassium levels and take supplements will this make me crave salt?
I am on quite a high dose of pred so should this affect my adrenal function or is it just me having weird cravings?
I have not been off pred for a while...
I think this is another question I will ask my poor GP.
Ratty does this now mean that you get free prescriptions, My mum has a friend that has Addison's syndrome/ disease I don't remember and she has to take take hydrocortisone to replace the natural cortisol she gets all her prescriptions free now because of this?
defo worth asking bout the free prescriptions in relation to the addisons!!
honey, in relation to low potassium and symptom of craving salt, from doing lil research i found this extract below, so check it out with your gp but its from an american website tho...
Have you ever been aware of a strong craving for salt? It is most commonly observed when people are under stress. We have observed that a craving for salt is often due to an adrenal insufficiency, as indicated by low levels of sodium and potassium levels as indicated on a hair analysis. One of the important hormones produced by the adrenal glands is aldosterone; a steroid hormone that helps regulate osmotic balance by causing sodium retention in the body. When adrenal activity is low, less aldosterone is produced. This results in an excessive loss of sodium through the kidneys.
Eating dietary salt will not correct the problem of sodium loss caused by low aldosterone levels. It will, however, temporarily replace some of the sodium that is being excreted due to low aldosterone levels. The judicious use of sea salt can avoid an excessive slowing of one's rate of metabolism by helping to maintain sodium levels. Once the adrenal glands are strengthened through a nutritional program, aldosterone levels rise and the craving for salt diminishes.
******* ALSO FOUND ON patient.co.uk about low potassium levels and their symptoms, so search on there for hypokalemia - as its says on there when your potassium too low, that can also cause cravings for salt too... so maybe need your potassium level checked again, even though your on potassium supplements??
check it out with gp mon?
good luck
x x x
Glad they sorted you out quickly Looby, that sounds like what should have happened in my case, however the endocrinologist I saw was worse than useless, she spoke very very little English, when I told her (repeatedly) that I didn't understand she'd say ""sorry you don't understand me it's because I'm Spanish"" - huh? Does that make it okay? Me thinks not. I left in tears because I was so scared at what I had picked up and at not understanding. It's only thanks to wonderful people here and my GP that I'm feeling better. The endocrinologist said she'd write immediately to my GP so I could be prescribed hydrocortisone, but, surprise surprise, that never happened, so my GP's chasing that up then going to force the consultants to actually confer with each other. I hope it makes you feel better - there's so many 'little' symptoms that on their own I wouldn't worry about but which together could all be explained by this so if the hydro sorts it out, I'll be one happy bunny - and if it sorts my salt craving, I shall celebrate with a large choccy cake, me thinks!
Honey - I'm afraid I can't answer your questions, as I understand it very little myself, though I'd assume if you're on high pred that would make up for any steroids your body isn't making so you wouldn't have symptoms. My symptoms started when lowering below what the body should naturally make and I had major problems when I was really sick and not keeping anything down.
Looby - on the medic-alert, I have a Tallisman that comes with a slip of paper inside that you write on yourself so you can update as necessary - saves having to get anything re-graved and ensures everything is up to date.
Honey, I don't know if I'd get free prescriptions for this, but I get them for another medical reason anyway, so does this mean double free prescriptions - will they pay me £7.40 for each item I get?! I'll be a millionaire before long!!
Thanks for the information folks...I think the answer is to see GP again...
WOW ratty you will be a millionaire if that is the case - hope so
I agree with Ratty. I dont think you would have symptoms of adrenal insufficiency whilst on pred, though your salt craving could be associated with the pred I guess. I haven't been on pred since Dec & my symptoms started a few months ago. Ratty I'm sorry u had such a useless cons !!! Hope u get your hydrocortisone soon. I've only had 2 doses and am feelin better already. Thanks for the info re talisman. Will have a look
xxxxx
Hi Ratty. Have you got any further with getting started on adrenal meds yet ????
Hope u have some answers soon xxxxx
don't worry
Hiya
If your adrenal output is nil, it's irreversible. But if the production of cortisol is even just 5% (like mine), there is a teeny chance your glands could slowly be encouraged to ""wake up"" over time. You start on 20mg hydrocortisone a day, then very, very gradually wean down (under supervision of course). I'm down to 12.5mg a day, but it's taken me 3 years to get here. (That's partly cause I take itraconazole, which also inhibits adrenal function.) My con says it's ""highly unlikely"" my adrenals will ever function normally, but I'm hoping to prove him wrong.
I totally freaked when first diagnosed - the emphasis on how not taking the h-c could rapidly be fatal is scary, but you do need to realise that missing doses just isn't an option. One missed dose is ok, but try not to miss any at all. I always carry a small supply on me. Just take it regularly (set an alarm on your mobile to remind you) and remember to double the dose if you're ill, & you'll be fine.
And yes this condition - hypoadrenalism - does mean you're exempt from paying for prescriptions, because cortisol is essential to life.
H-c is a more natural form of steroid and therefore much less harmful, in terms of side-effects, than pred, so look at it this way - even tho it's a drag that pred has shrivelled your adrenal glands, you're much better off taking h-c than pred. Also, before h-c, people with this condition just died, so thank goodness we can take it and live normal lives!
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Argh! opinions please!
Adrenal insufficiency from long term prednisolone
