Hi everyone I always seem to be writing questions on here about Prednisone steroids. I have rung up my Health Centre who weren’t particularly helpful really. I hate the steroids I have to take when I get chest infections alongside my antibiotics. I am absolutely manic on them, almost out of my mind! Cannot stop talking but feel SO anxious all the time as if something really bad is going to happen. I do not sleep hardly at all. It’s horrible. I am under a specialist who has just said take 4x5mg but I always end up taking 5 x 5mg to start off, as chest never feels any better until I am the higher dose. And then it’s the tapering down . I cannot just come off them I absolutely go into meltdown shaking and feeling ghastly. I am very sensible with tapering down. I had a word with one of the respiratory nurses by phone as my specialist ill with Covid and she said you have had too many steroids and you need to have blood tests after you have come off them? I know what this is about and realise my Adrenal gland could have stopped working and not producing corsidol . My question is to fellow lungies has anybody else been asked to have blood tests. I have tapered down from early December to about 2 weeks ago in January. This is my only course on them this winter so not sure why I have to have blood tests and if they do find my body has stopped producing the fight and flight hormone what is the treatment if any?
I did read about taking Potassium tablets?
I do feel very flat now off of them and sleeping for Britain but not surprised about the sleep!
I so wish there was an alternative to them really.
Thanks for reading
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Monawhite1
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I think it’s quite unusual to react this badly to steroids. I’m at the other end of the tolerance scale & barely react at all (also unusual!)
I’m glad the nurse is thinking of your adrenals. Too often I hear of people being taken off them abruptly & becoming quite ill through lack of cortisol.
Adrenal Insufficiency can be dangerous, but worry not, because IF you’re shown to have it, you’ll be prescribed cortisol replacement therapy & referred to an endocrinologist. This is in the form of either hydrocortisone, or very low dose prednisone (eg I take 3mg pred daily.) It works well. Let’s hope you don’t need them tho 🤞🤞🤞
Thank you Hanne62 that is very interesting. To be honest I have been thinking of avoiding the blood tests but reading the replies I think it best I have them and find out. I have been to 2 sessions of Copd rehab and there was a lady there who said she couldn’t take steroids as she had a really bad psychotic episode? I think I know what she meant now. I am pretty horrible when I am on then. Normally by nature I have a sunny disposition. Just so unlike me to be so bad tempered etc.Thank you for your reply. I will be ringing up the Health centre tomorrow to get those blood tests.
Hi, I also react very severely to steroids. Mentally I’m ready to jump off a cliff within 2/3 days of a short course. I can no longer take them long term because of the severity and can only just about get through a 5/7 day course of them. My asthma nurse now rings me on day 2 and day 5 to check how I’m doing (both physically but mentally too!) and we’ve tried a lesser dose to see if it helps.
I’m guessing they’ll be wanting to check your adrenals like Hanne62 said.
I hope you start to feel better soon! I really empathise with the anxiety and mental side effects!
I am in the same position I am down to 7mls a day but I find that my legs ache badly and my body is weak I have heard that some people end up in hospital for withdrawal. My doctor says start taking 25ml again then go off them it’s not as easy as that
I really feel for you. They can be so unpleasant I always get bad leg aches and palpitations but it does seem to settle down. As I am back on them again suffering from covid I am in my 7th day so my dosage has been reduced but still feel strange. Not much we can do when it's obvious we need it but cruel side effects.
Yes I failed to mention those side effects as well as all the others too!,Sorry to hear you have Covid too. I suppose you are right though steroids do get us better.
I do sympathise, I hate how they make me feel too with palpitations etc. If ever I have to take them I set alarm for 5am, nibble an oatcake, take the pred then go ask to sleep. Doing this really made a difference especially to sleep & palpitations in the night. It's very interesting about the cortisol issue connection so I'm going to read up about it.
I have no experience of taking steroids but it sounds as if your reaction is so very distressful. Could you ask to see an endocrinologist now to assess your use of them? Is there an alternative approach to that would be advisable.
So sorry to hear about the anxiety it causes you. I just get the buzziness in the night but can cope with that. I developed adrenal suppression about 12 years ago as rare side effects of sumbicort inhaler. Saw endocrinologist and the solution is 10mg hydrocortisone tablet for life. It keeps the cortisol at the right level. Hope you can find some ways to manage your anxiety, maybe some alternative relaxation therapies and techniques. Good luck!
Your nurse could be talking about this: labtestsonline.org.uk/tests... had it done when tapering to check if my adrenals were kicking in. My understanding is once you get below 7mg your adrenals need to start taking over but they can be a bit slow. Unfortunately those that prescribe pred often don’t realise the consequences of taking it and tapering too quickly. I hope you feel better soon but do push for those blood tests.
I’m so sorry and sadly I’ve not got any helpful advice as I feel the same as you when I take them! Maybe it helps a tiny bit just to know you’re not on your own with this horrid side effect. Good luck xxx
Definitely get your cortisol levels checked as steroids can cause adrenal insufficiency as other people have said. It can cause a lot of fatigue, dizziness, feeling washed out and it can be life-threatening. I stopped my steroids last year and felt very poorly and it was only after I re-started the steroids I felt better again. Don't stop the steroids until you have had your cortisol checked.
Thank you ccccc for replying. Yes going to ring up tomorrow to get those tests done. Will be wearing my mask etc. I think my Docs have relaxed a bit so another reason I have been a bit hesitant to go but I do feel I must get this sorted
I cannot comment as to why you need to have blood tests but there muct be a very good reason why. My body no longer makes its own and I take a maintenance dose of 5 mgs daily. That said, the last time I was on a full blown course I nearly went crazy, difficulty sleeping, sverely anxious and severe stomach upsets. I hate the things but they have saved my life as I was taking a course at least 4 times a year due to chest infections. I hope you get some answers and a remedy. Bless you. Christina
Thank you for replying. Sorry to hear you suffer so bad,y like me! This website is so good. I now realise why I should have these blood tests and if my adrenal gland has stopped working and what needs to be done if it has. I tried to discuss with my Health Centre but nobody could tell me. So need those blood tests!But I have some good knowledge now too!
In 32 years as a professional mental health social worker. I worked with a few people who had puzzling serious mental ill-health symptoms. It eventually turned out that those symptoms were caused by long term use of steroids. I now refuse to take them if offered, including those in rescue medication for COPD.
Just to give you a bit of hope and I know nothing . My Mother had Sarcoidosis and was on steroids long term. I mean years. The Dr told her she would never come off them but she did. . So let’s hope you will be ok.
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