My husband has been lowering his dose of Prednisone from 10 mg at Christmas to now taking 2.5 mg. Today he collapsed, shaking, with pulse of 186.I had to hep him to get to the bedroom . I nearly called 111 for help I was so worried. He has felt ill for the last few days, very weak and wobbly. He was quite scared by the feeling of collapsing, totally weak, and scared by his high pulse. My feeling is that he has lowered the dose too quickly. I ask him to talk to the doctor as soon as possible. meanwhile he has taken an extra 7.5g today to bring the dose back to 10mg. He lowered the dose as the leg pains etc are so much better and the Prednisone gives him awful dreams and high anxiety. so he seems between a rock and a hard place at the moment. Any advice ?
Feeing faint after lowering prednisone - PMRGCAuk
Feeing faint after lowering prednisone
Others with more knowledge will be along but this doesn't seem like a side effect of tapering that I've ever heard of or recognise......unless it could be related to adrenal insufficiency perhaps.The symptoms he's experienced should be checked out today though........even if they're pred related, collapsing and increased heart rate need to be addressed by a medical professional asap.
Honestly I’m not surprised, much too quick a reduction which has caused adrenal insufficiency issues….and you should have rung 111..but they probably would have said to do what you actually did.
This post give advice on adrenals - for info - healthunlocked.com/pmrgcauk...
- and this gives more (including one above) - healthunlocked.com/pmrgcauk...
Has your husband decided to manage his own tapering, or did doctor agree - I hope not.
I appreciate the sleep and anxiety are not nice, but an adrenal crisis is much worse…hopefully he will recover, but please don’t let him reduce like that again.
Get him stable on 10mg he may be able to drop back down to 8 or 7.5mg , but thereafter reduce more slowly….1mg every 4-8 weeks, no quicker!
Talk to GP about dreams and anxiety, there is help out there, your husband just needs to access it….
Sorry you have had to deal with this…🌸
Thanks for the quick reply. I’ve read out your answer to my husband, and hopefully persuaded him to get an appt with the gp. Though as you know, they are hard to book these days. I hope he will listen to your advice, I read out to him ! And will not constantly aim for getting off the tablets but accept that taking them is a better option than collapsing, and having a racing pulse like that. The nightmares and insomnia are a real problem. He tries whisky or hot chocolate at night but little seems to help. No, the GP didn’t recommend he reduce. He has decided this himself . I nearly did dial 111 but he seemed to recover so it seems better that he rest at home. He is still resting and probably will for the rest of the day. What a worry it is.
Yes it is…..just try and impress upon he he could have done himself some real damage…..
We all know Pred’s got some bad side effects, but you need to come off it slowly…hopefully he will realise that now.
Take care.
Hot Chocolate is fine, but stay way from strong alcoholic drinks and minimize intake of any alcoholic beverages.
He is trying to avoid all caffeine now. He tries anything ! He was having hot chocolate at night with a whisky chaser!
That’s enough to make anyone dream! 🤦🏻♀️
Sounds scary! I really would have called 111 to be honest or even 999. It could have been cardiac (or still could be) or a stroke, just for starters. I think he did the right thing though by upping his Pred because it could have been an adrenal crisis which can be life threatening. This occurs when the body hasn’t got enough Cortisol (the natural steroid) or Cortisone (the artificial version) to cope with life. If he is one of many who find their adrenal function has gone to sleep while on higher doses than 5mg, he would have felt going from 10mg to 2.5mg. The adrenal axis (the whole process behind making cortisol) needs to be gently coaxed into action by slowly withdrawing Pred. If you do it too fast, there’s not enough Pred in the system any more and the adrenal glands haven’t realised they have to make up the shortfall with the body’s natural version, cortisol. Even if his PMR has magically died down, you still can’t hurry this bit for the above reason. Out of interest with too low a steroid or natural cortisol level it can cause bad dreams, anxiety, depression etc. personally, from about 7mg I reduced by 0.5mg slowly introducing it over 4-6 weeks. As I got lower I got slower, even to 14 weeks at one point.
Thanks. He wasn’t showing any other symptoms of heart or stroke problems….not that I’m medically qualified. He was just in a state of collapse and actually lay on the floor until I persuaded him to get up and get to the bed. I think your suggestion of an adrenal crisis might be what happened. He has been frightened now and will definately phone the surgery Monday. In not then I will.
Snazzy hi there
Like you, I have very very slowly managed to reduce to 1:5mg. That was over a period of four months reducing 0:5mg every 6 weeks. I got stuck on 2:5mg and couldn’t reduce without getting pain symptoms. I am hoping that I can manage to keep this slow reduction and I will give it even longer between drops of 0:5mg.
YuliK 😷
While reducing the steroids too fast does seem like a logical reason for this wouldn't you both feel more reassured if you rang 111 and asked for a medical opinion now?
He doesn’t want me to . He is resting now and his pulse has gone down, so I am just hoping he is ok. I don’t want to panic .
Sometimes there are occasions when you have to ignore what they want I fear. My husband insisted HE didn't need a doctor one night when he was obviously not able to make an informed decision - he was severely dehydrated after a longhaul flight and a mix up on his tablets we think, If I'd listened to him ...
I agree. Something that required medical aid has happened suddenly three times in my family (not PMR related). The person who was obliged to call 111 is still here now.
Reducing from 10mg at Christmas to 2.5mg now hasn't given his body a chance to catch up with the reduced steroid in the body - and the adrenal glands simply aren't producing enough cortisol for the body to function. An adrenal crisis is a medical emergency and can make the patient very ill - ill enough to need hospital admission and even ICU if initially unrecognised.
If it had been me I'd have called 999 - paramedics carry hydrocortisone injections for such a situation. You were lucky, he was conscious so could swallow tablets. But had he collapsed with no-one around he could have been in serious trouble. Many patients at low doses of pred whose adrenal function is still blunted often have a rescue pack of hydrocortisone injections to keep at home and a family member is trained to administer it.
Please don't let him do it again!
Gosh. I didn’t know that. I shall be a lot firmer with him in future and also I didn’t realise the seriousness of the situation. I have learnt a lot in the last two hours or so. And if it ever happens again I shall know what to do. Dial 111 or 999 without asking him . He just is terrified of all things medical and of hospitals even more.
Think it's a man thing!!!! Mine was a healthcare professional at consultant level - but you had to drag him to the doctor! Vascular specialist - and was very equivocal about getting advice for a potential DVT! Then he would decide whatever it was was better so didn't need to take the medication any more - without thinking his gout had disappeared BECAUSE of the tablets! And hadn't a clue what was what and why he took it - a real "the round whilte tablet for my heart doctor ..."! Absolutely drove me mad - have enough to remember of my own stuff!
that sounds the same kind of way of dealing with things. Sort of head in the sand... dont want to know...it will sort itself out..... or going the other way... I'm probably on my way out etc !!
Not this “man thing” I read up enough on my condition and don’t take those kinds of risks with my life. Also, not the least bit shy after entering a grocery store and asking what isle something is in as I want to get it and out ASAP!😂
Always exceptions ...
It might be better to let him read some of the information we have given about adrenal crisis and tapering.
That was an inadvisably steep drop in Prednisalone which may have caused problems related to Adrenal function.His heart should be checked and he should be seen by a doctor as a matter of urgency. I believe that A&E would take him very seriously.
I have called 111. Answered a lot of questions relating to heart attack and stroke. Now I am waiting for a return call from a clinician.
Good - hope they can put your mind at rest…
Fingers crossed!
This happened to my husband a few weeks ago - I didn’t wait to hear what he said - I phoned our equivalent of 999 and the ambulance was there in 10 minutes. He was in hospital for six days. Signs like your OH had could be very dangerous.
I shall need help myself at this rate !!
Hope not 😳
Well done Dubonnet, I’m glad you’ve called 111 👍
Best to get OH checked out, even though he seems improved now. Also 111 will let your GP surgery know what happened (I think) which should make it easier to get some continuity of care from Monday.
Hugs - what a day x
Thanks. I feel exhausted ! But this forum is just brilliant.
well, after my initial call I was told we would get a call back. This has now taken place and my husband talked to the person on the other end. Now we are waiting for a further call from a doctor on duty . I thought it would be just one call !
Well they are doing the right thing …so that’s good, if a bit worrying and protracted for you,
I find that I am weak and wobbly and feel faint particularly in the mornings. I have put it down to my adrenals getting back into action or at least trying to!
Just so you can tell him he’s not alone! My nightmares are so bad, so convoluted & intense, & occur every night. I’m down to 4 hours sleep a night. I was blaming it on a drug called amitryptylline, but I’ve had to stop it for other reasons & the nightmares continue, they are very detailed, I could write a book!! I never feel I’ve had a good nights sleep. I dropped my steroids too fast last autumn, keen to say goodbye to pred…but not as fast as him…just from 6mg to 3mg quickly! I had bad adrenal symptoms, & had to accept going back to 5mg. I’m now doing the job properly, dropping 0.5mg each month (though that may be too fast for him, take note of all the other comments here, please, these people have much experience, I don’t!)
Thanks for your reply. I shall tell him others have the same problem with awful nightmares. They obviously stay in his head after he has woken up, which is upsetting.
Oh yes, I have perfect recall of all the horrible happenings…woke up shaking after the plane crash the other night. I have a phobia of frogs & toads & kids were putting them down my tshirt one night last week. I can still picture it all. I get up, walk around the cottage, but then when I go back to sleep, the nightmare picks up from where it ‘stopped’! No fun.
Doesn't sound like medical advice was followed, 10mg at Christmas to 2.5 mid Feb is far too quick, usually decrease is 1mg a month. However, as others have said, this has to be checked out as an emergency, THIS MAYBE more heart related than PMR? So please don't delay, fast pulse could result in Stroke. Hope he feels better soon
Thanks. He now has to call the surgery Monday and they should make a face to face appointment. The 111 service sends details of their talk with him, I understand. Part of the problem was overwhelming anxiety I think. Like an extreme panic attack.
Also part of an adrenal crisis - and the anxiety makes it worse, a vicious circle.
thanks. I shall try and gently tell him.
Good luck!!!! None so deaf as those who will not hear - as my mother used to say! Mine got quite stroppy when told - though maybe I wasn't very gentle 
- but he'd then say something a week or two later that showed he had registered the fact. Until he forgot again ...
I forgot to say originally - I had a heart rate of 190 one Sunday morning last October. I checked carefully (I have a pulse oximeter), one daughter checked (she works in A&E) and I called the emergency number. 15 mins later I had the emergency doctor and nurse in their fancy car and an ambulance with 3 crew on the doorstep and after a few bits and pieces was blue-lighted to hospital. Spent until about 3.30pm on the ward and was allowed home because they had got it down to something more acceptable.
Hearts aren't designed to go at that rate for long -and their reaction tends to be to just stop. Which isn't healthy ...
Never mess about with hearts!
Another thing that can commonly happen with low cortisol or having prednisone to low is hypoglycemia. This is what the endocrinologist told me. That means you have to be careful about not going too long without eating. Symptoms are panic, inability to sleep, anxiety, and shakiness without hunger. The solution is not sugar but complex carbohydrates fats and proteins as frequents snacks.
. I actually have to test my sugar because it has gone so low and I didn’t even know it. It’s gotten as low as 44.Alcohol will make this worse because it is a carbohydrate that may cause the insulin to shoot up and eat up all the sugar and then crash.
Thanks. I’ll keep chocolate biscuits available or similar.
Best would be some protein: yogurt chocolate milk but not too much sugar, piece of cheese with the crackers. Because crackers themselves unless they’re super whole wheat and whole grain are just another simple carbohydrate and will not really help in the long run. High fiber foods with each meal will help.
Hi Dubonnet, sorry you and your husband had such a scare. Others have given good advice about tapering and adrenals. There is also good advice on the site for help with sleep. I found any carbohydrates after 8pm would wind me up and prevent sleep (so no alcohol or sweet drinks). Also taking my D3 and calcium at night helped. Avoiding blue screen time such as being on one’s phone or computer within a couple hours of bedtime is also a good idea. If he is willing to experiment a little and find a routine that helps for him, better sleep will also help the anxiety. Best of luck!
Heavens what a story! Sometimes just kbo’ing is clearly not a good plan!
What a dangerously high pulse rate! Had a friend with 200 level. Not on steroids. Docs freaked. Gave her meds and she's was ok for a year. Then it happened again. They say she might not make it through another and she's having an aortal ablation soon. Men can be pretty bad about seeking needed medical advice. Fortunately, my female friend wasn't. I don't know about the UK or elsewhere but in the U.S. if you have to go into the hospital, you want someone there night and day to be your advocate. Hospital workers have been understaffed and overworked (even before covid). Lives of friends and family of mine have been saved by having someone with them and insisting on help when problems arose. Sorry to be a bit off topic. I understand it's good to have a medical alert bracelet or some such so med workers know you're on steroids. Getting one!
Hi dubonnet. I’m so glad you’ve rung 111 now. It’s always best to get a medic pro to check things out and sometimes we have to ignore our loved ones!! You’d never have forgiven yourself if anything more serious had happened to your husband.
I’m certainly no expert on this wonderful site, but even I know that one can’t taper down so quickly as your hubby has done. It’s got to be a very gradual taper.
I do hope your husband is soon improved.
Thanks. I think he panicked which raised his pulse, on top of everything else. Hopefully he will see a doctor face to face in the coming week.
Hi, As one who has had a full blown adrenal crisis due to lack of cortisol as a result of a very bad reaction to an infusion drug in 2019, I can only say how pleased I am to hear your husband recovered from the incident. I was unconscious for over four hours and my life was saved by quick thinking paramedics. While I was unconscious I completely soiled and vomited over myself. With absolutely no knowledge of what was going on.
I knew I wasn't well and sent my husband up to the doctors to pick up some anti emetic as I was feeling sick and dizzy. When he came home he found me slumped unconscious on the floor between the bed and bedside table. I still have no knowledge of me going upstairs or even him going out! I finally started to come round in the emergency department.
My reason for writing is after the crisis I was given a synacthen test which showed my adrenal function was not sufficient, the advice was to never go lower than 5mg prednisalone, but I'm still not happy that low as I have had two subsequent crises and I have self administered (or husband) the emergency supply of hydrocortisone injection I was given. I will be very, very slow to reduce if ever I am brave enough to do. I have had PMR for well over 10 years now, I think? As a result I am a steroid responder, with steroid induced Addisons and steroid myopathy and I have many other nasty side effects from the drug, but I now realise just how much we need these tiny insignificant looking pills. .
I sincerely wish your husband well .
That sounded really terrible for you. Thank goodness you had emergency help fairly quickly. My O H didn’t pass out but he was so agitated and weak, and lay on the floor almost unable to get up. Then he became very frightened as well.Hopefully tomorrow will get a GP appointment. Thank you for taking the time to write, I think we will both take his condition and the steroids more seriously in future. This has been a shock to him, to say the least . The medic on111 who finally spoke to him was rather dismissive of the kits to measure heart and pulse that many of us have at home. She said they weren’t accurate !
They might not be that accurate - but at a heart rate of over 150, five here or there is immaterial! You need the paramedics!! I rang the emergency services here and said my pulse was about 180-190, they were on their way in minutes. They didn't question it.
Oh dear. I'm so sorry you both didn't get the help and reassurance you needed. We live in rural Suffolk (uk) and are at least one hour from any hospital or ambulance.
Since my episodes we have bought an oximeter and BP monitor just so my husband can give some numbers to the emergency team. The monitors perhaps are not hospital grade, but I think it's at least something to focus on and help with the anxiety. I hope you get an appointment tomorrow and your husband continues to improve.
Thanks.
"We live in rural Suffolk (uk) and are at least one hour from any hospital or ambulance."
That's why they have the helicopter medics - in a cardiac case with very high heart rate in an isolated place they would fly in higher qualified medics with the medication and equipment even if they used an ambulance to transport afterwards,
I've just re read my original post and I wasn't clear. Because my adrenal glands are under performing, that I must not go below 5mg prednisalone. It will be different for every person, but this is just my experience. Sorry for any misunderstanding.
based on my drawdown experience it seems like a flare similar to my last one in November. i went to the emergency in the hospital for some monitoring and the symptom settled down after 2 hours. since no issues and down to 3 mg Pred plus Actemra. now saying that as my Pred has dropped i am finding that my hazy head and sleep issues come back in the last days of week before the next injection. Actemra has been very good at helping my drawdown off Pred. it been a long road but i am generally much better.
Sounds like an adrenal crisis. I had one in hospital following major surgery and doctors not taking my long term steroid use into account. My blood pressure dropped dramatically, my mouth became so dry my tongue was almost stuck to the roof and I shook uncontrollably for quite some time. Pulse rate will often increase in an attempt to push blood round to vital organs.
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