Yet another steroid side-effect?!!

[Janann25]

After four years of many ups and downs, plus more side effects than I care to mention, I have now reduced - very slowly! - to 4mg per day. I’ve been doing very well - apart from my arthritis reading it’s ugly head once again - but have now started something which is totally new to me. One of my side effects has been dizziness, which hasn’t decreased even on this comparatively low dose, but I’ve now had a couple of episodes where I just haven’t felt “with it”. The first time, I went to get something from a kitchen cupboard and, although many of us can’t remember why we meant to do something, this was different. It’s difficult to explain but it was just as if, for a moment, I didn’t recognise the cupboard and wasn’t sure what I was doing. This was probably a couple of months ago then, on Saturday, I was driving to my local supermarket where I also wanted to get petrol. But as I got to the traffic lights just before the shopping centre, I knew where I was but I just couldn’t remember where I went to get to the petrol station. It was only a temporary moment but it really unnerved me. As an aside, my blood pressure is fine so I don’t think it’s anything associated with that.

I’d really appreciate hearing whether anyone else has experienced this.

Many thanks, Jan

[PMRpro Ambassador]

It could be associated with the low dose of pred and your body not having kept up with the production of a top-up of natural cortisol. But I think it is something that needs to be reported and looked at.

Your BP can appear fine - but you didn't measure it during the "episode" did you? I was having short spells of dizziness, like a wave passing over me. My BP when checked always looked fine but I had a 24 hour Holter BP monitor which just happened to measure the BP as one of these spells happened - they measure every 1/2 hour during the day and hourly at night. All the readings except this one were fine - for this particular one my BP had plummeted. No wonder I felt funny! At that point it was fleeting and almost always seemed to happen if I had become overheated so it was ignored. Later they happened more often but never when I was on a monitor or when I was on a multi-day monitor it couldn't be captured in retrospect. I was just about to ask for an external loop monitor(it stores the previous 4 minutes of recording on a continuous basis so when you hit the button immediately they get a trace covering the moment it happened) when events overtook me, I had a bad episode, fell and hit my head. In hospital they saw tachycardias followed by a bradycardia with long pauses - during which my BP plummeted. When they lasted too long, I was dizzy, only collapsed that once though. I was given a pacemaker - no more funny dos.

[Janann25 in reply to PMRpro]

Thank you - once again! for your reply and advice. Yes, I feel concerned enough to go through the trauma of trying to ask a doctor for his comments. The last time I needed to contact a doctor, it took me one hour fifty minutes to get a reply and then It was a question of “you are 24 in the queue”!! But, hey ho, it is the way it is and there are many people needing advice more than me. I’ll report back when I have more news.

[PMRpro Ambassador in reply to Janann25]

You must be bothered if you are willing to go to that effort!!! There is always 111 or A&E if you get really concerned,

[Janann25 in reply to PMRpro]

It was a mistake on a new medication so I didn’t have a choice! I’ll try the doctor tomorrow but will try 111 if that doesn’t work.

[123-go in reply to Janann25]

I agree with PMRpro. People have had different experiences when calling 111 but you should give them a try. The only time I have called them I told the call handler my symptoms and she said she would get a doctor to call me. The doctor's call came a very time later and I was advised to go to A and E. You really have nothing to lose.

[Janann25 in reply to 123-go]

I’ve always been worried about bothering 111 but after your’s and PMRpro’s advice, if necessary I’ll ring 111. Thank you.

[PMRpro Ambassador in reply to Janann25]

Dizzy spells of that sort are something that needs to be taken seriously - have one at the top of the stairs and the result can be catastrophic as a close friend's husband has found out.

[DorsetLady PMRGCAuk volunteer in reply to Janann25]

Never be worried about contacting 111 - that’s what they are there for......and I’m sure they’d rather you do that than miss something serious.

[Thelmarina in reply to Janann25]

Have you tried booking online?

[Janann25 in reply to Thelmarina]

Would love to be able to do that but our surgery is just about surviving - with the support of our hospital. I’ve managed to get a telephone consultation on Thursday. If there’s no joy from that, I’ll have to go down the 111 route.

[SheffieldJane]

I am glad that you intend to report these little absences, they are odd and sound quite different to the usual foggy brain we get. I feel sharper now I am taking zinc but it wasn’t as you describe - more forgetful and trying to remember proper nouns and occasionally using the wrong word for things. Good luck and go carefully. I too wonder if it is a manifestation of low Cortisol.

[Karenjaninaz in reply to SheffieldJane]

I have recently been diagnosed with adrenal insufficiency. For the last several months my steroid doses have been between 4.75 and 4.25 but those doses did not seem to hack it with me; dizziness, feeling unwell, worsening IBS, mentally less sharp. Went back up to 5 mgm feeling much better. I am testing morning blood sugar and they can be quite low 59s-69s despite a decent supper. The results compare exactly to hospital results. This smells of low cortisol. I am consulting an endocrinologist, coming Friday, who has more experience than my last consult who deals mostly with diabetes.