I just got back from a much anticipated visit to my rheumy who surprised me with some of his comments.
My symptoms, presently, alerted the rheumy for me to get an echocardiogram in response to CAD (Coronary Artery Disease). The symptoms are as follows:
Increased fatigue, increased sweating, shortness of breath (especially in the AM), tired-sounding voice upon minimal exertion.
When I asked if these symptoms could be related to adrenal fatigue, he said not at all likely.
When I mentioned the above symptoms, he dismissed my concerns about possible adrenal insufficiency and instead focused on CAD (Coronary Artery Disease). I was surprised at this, since I haven't heard too much of it here on the forum, so I "googled" CAD and prednisone usage and WOW. It seems that even at low doses of prednisone (5 mg, for example), CAD is a real possibility. From google:
"After a year of treatment, people taking a daily dose of less than 5 mg prednisolone had twice their original risk of developing cardiovascular disease. People taking doses of more than 25 mg had six times their original risk of developing cardiovascular disease."
This was a bit shocking to me, as it's something I was never encouraged to pay attention to.
I'm a GCA patient, having started at 60 mg about 2 years ago and presently down to 5 mg.
I'd appreciate any thoughts about all this.
Thanks so much
Written by
montebello
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There was discussion of that paper recently on the forum. Yes, being on pred can increase the risk but so can having RA and other autoimmune disorders. If you stop to worry about every slightly increased risk you might as well give up now. If you DON'T take pred and allow unmanaged inflammation to romp through your body, then you increase the risk of other things - depression, cancers and a load of other inflammation-related disorders.
I'd just like to add, that I've also experienced all of those symptoms, and extensive cardiac tests have shown that apart from periodic episodes of ectopic beats (which are uncomfortable but harmless) my heart is actually healthy & normal and not the cause of my fatigue, or breathlessness.
Other related tests have also proved to be normal, so it would seem that in my case, the most likely cause of my symptoms are indeed my adrenals beginning to wake up.
I am currently on 2mgs of prednisolone.
One mustn't forget that steroids can also cause muscle weakness which obviously impacts on strength & stamina too.
Steroids can & do cause adverse side effects on many different aspects of our health & well-being and therefore its important to be mindful that any concerning symptoms should always be investigated thoroughly to eliminate any more serious problems.
We must also remember that we're all individuals with a different set of circumstances, but there's still much we can do to avoid & minimise the emergence of some of the side effects of steroids....... such as eating a healthy diet, keeping well hydrated, exercising within our capability, etc.
We're not all going to experience every potential side effect, if any at all, but if we do, then usually there are strategies we can deploy to mitigate them.
Try not to panic, but do take the necessary steps that will put your mind at rest.
You and I have followed a similar path and timings with GCA Montebello. Saw the endocrinology nurse yesterday as I have been diagnosed with adrenal insufficiency following tests and an appointment with the endocrinologist. So, left armed with a very slow taper and the injections in case of crises plus an information pack. A lot to take in as I was quite blasé prior to the appointment due the emerging cardiac problems I’m facing.
I too thought extreme fatigue was linked to adrenals for months but suspected my Afib (diagnosed Aug 23 following a TIA) wasn’t well controlled. I have had some breathlessness. Had echocardiogram and 2 week monitor which showed the longest bout of Afib was 2 days 21hrs. The data virtually replicated my Apple Watch as well as how ill I’d been feeling. I’m seeing a cardiologist on Thursday to get an insight into the report and what can be done.
The NHS waiting lists for Cardiology are long so I’ve paid for the tests and the initial appointment with the cardiologist. After trying to speak to a human to find out where I am on the waiting list I eventually found out I was down as a routine appointment! With BNP blood scores of well over 5,000 I was quite surprised. It’s all very hard work trying to keep up with everything.
No one is saying the cardiac problems are connected in anyway with the GCA or steroids.
I came to the conclusion my mistake when my a/fib became daily 12 hour stints was not to turn up at the ED regularly! Not in the UK so the waits wouldn't have been so long but it might have speeded up the ablation I was immediately put in for when I did see the cardiologist after a couple of months. The wait for routine was 3-4 months they said but it was actually 7 and then the date happened to be the one day our docs went on strike!!! I only had to wait another month though and they were very apologetic, However - I got very unfit in that year because it really stopped me doing much.
I’m in the same position re lack of exercise PMRpro. The A&E waits here are horrendous. Even when I was actually referred to AMRA when my GP suspected a heart attack (thankfully not) I was there 9 hours and my ECG showed sinus rhythm at that point - which it also did a week previously at the surgery. I was only offered a 24 hr ECG on the NHS which I knew could show normality on the wrong day. I’m glad I’ve had the tests done and I’ll need to rethink what’s next after I’ve had things explained to me and potential options. Not having a great quality of life at the moment as I’m basically ok for a couple of days then not. It’s quite the rhythm now and difficult to plan life. Plus I suppose I have the struggling adrenals which could be a factor with fatigue as well.
I was on plenty of pred to cover the adrenal factor but the fatigue after an episode was something else! When it first started up so badly I had salad a lot - I couldn't stand to cook so chucking a piece of meat in the airfryer and having salad was ideal. Even on Christmas Day when I wanted to go out for pizza - our tradition before Covid and my husband's death. The medication that had managed it had failed - but a change of drug almost sorted it but not quite.
I actually had had 24 hour monitors that showed nothing before the a/fib with brady/tachys was identified. It was being delivered to hospital with something else and a drug reaction that got me the pacemaker just as the a/fib was identified as the result of the same drug reaction originally but it wasn't on my notes.
That all sounds very stressful. It’ll be interesting looking at the data from the echo/heart monitor trace as to what is recommended for me. I’ve found you do have to take control of your own health and it’s hard work. Looking back I think I should have been followed up after the TIA/Afib incident but our health service is under so much pressure. I’m in a hurry to get something done so I can engage more with life.
I haven't really thought of it as stressful but the care where I live is good if possibly a bit laid back at times! But there were no arguments about the ablation which has had a great effect - and had the a/fib been found now it would have been firstline at the age I was. Luckily I was still in the age range when the medication stopped working well.
I’m 69, due to be 70 this December so don’t know how that may affect things. If I could have an ablation and be ok afterwards with just (!) the adrenal insufficiency to sort it’d be one less thing to deal with….thanks for your positivity and support.
In my region of northern Italy, if you are diagnosed at 60 you will almost certainly be offered ablation, at 80 it would be very unusual and at 70 it is the point at which it changes and depends on you, if you are active and engaged in life in general, you will get one. No idea what the UK does in general though a close friend in Southhampton had her ablation in her mid-70s.
How fortuitous is this? I’ve just had a phone call from the Cardiology department at our NHS hospital with an offer of an appointment tomorrow to see a consultant. My GP had contacted them to speed up things and they happen to have one appointment tomorrow. They have the echo report and I’ll take the heart monitor report if that hasn’t reached them. I’ve cancelled the private consultant appointment but can follow up if things grind to a halt. They were very understanding being a self pay patient and his medical secretary has given me her direct line which saves ages pressing button 1, 2, 3 whatever to actually speak to someone.
Oh I did! I’ll be armed with a timeline of my ailments, list of meds and the heart monitor report. Can’t believe that stroke of luck. Fingers crossed I get somewhere. When the NHS works it’s incredible. Had an hour’s discussion with a lovely endo nurse yesterday. God, there’s so much wrong with me I struggle to keep up with it all!
Haha - my daughter got a GP appointment like that today. Rang yesterday and was told to ring lunchtime today - today told needed to ring 08.30 for routine AND emergency appointments. But you can't get through at all then! Then one came up cancelled on the screen - so she got it!
The many potentially-serious side effects of corticosteroids are well known. That's why they should never be prescribed carelessly, and both the dose and duration should be minimised. Transplant organ recipients, and other patients needing permanent immunosuppression, are moved on to one or more non-steroidal alternatives at the earliest opportunity. These each come with their own complications, of course.
I'm glad you are having the testing to sort it out! Over the past five years, sometimes I would get frustrated just trying to nail something down and figure out what was causing what!! So frustrated, I decided to give up 'worrying.' I knew I didn't want to lose my vision, so that was it! I made a choice. You are doing the right thing. I see my primary care physician every three months, and I let her worry.
I know after five years on steroids, I have myopathy and my leg muscles are weak. Plus, I'm not thirty anymore and the blooming disease aged me at least 10 years......I also took a pledge never to read any material regarding side effects.
Thank you Grammy. Always good hearing from you. You know, I'm not really worrying about this at all. My main purpose in posting was to alert others to the possibility that our symptoms have multiple possible causes. In my case, I assumed they were because of adrenal insufficiency whereas they MIGHT be Cardiovascular in nature.
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