More questions about low dose of Pred and Adrenal Insufficiency

[Valnvaughan]

Hi, I read with interest the explanations of Adrenal Insufficiency recently.

Has anyone an explanation for my problem?

I have been on Prednisolone for over 3 years since PMR was diagnosed in July 2015. My highest dose was 15mg . I have suffered "flares" as I reduced, well at least the GP diagnosed flares, but now it seems they were due to increasing osteoarthritis of the hips. At 5mg I had a right hip replacement in May2018. 48 hours after surgery I suffered severe vomitting and an atrial fibrillation event, diagnosed by a cardiologist called to attend me. I was not given any long term medication for this, but gave myself daily blood thinning injections for 6 weeks and had an ECG at the GP which was good. My recovery went well and I reduced Pred slowly, now on 3.5 mg daily. Then my left hip could not cope with the demands on it. I am reduced to using a wheelchair and waiting a 2nd hip replacement in October.

On Saturday morning at 2am, after a busier than usual 2 days, I woke to visit the bathroom and again 20 minutes later. I have been craving salt and am thirstiest than usual. As I lay back in bed my heart began to race. I got up to sit in a chair feeling generally unwell with a hot clammy skin, and shallow breathing. My blood pressure was higher than normal but heart rate only 70, but felt much more. 10 minutes later my BP was very low for me with heart rate of 100. ( I take 2 medicines for high BP for 30 years and home monitor). I phoned 111 to see what action if any I should take. A clinician called me back and advised me to go to local A&E (in UK) driven by someone else or she would send an ambulance. I woke my sleeping baby husband and we drove the 16 miles to QA in Porsmouth, fearing that Friday night drunks would still be packing the area at 4am. It was quiet. I was seen in 10 minutes. I had an ECG, blood tests and a chest X-ray. I was tired and though the consultant seemed to ask all the right questions, I feel I did not ask enough. All tests proved negative, and by this time I was feeling better. She thought I had probably had an atrial fibrillation but it was not provable. At 7.30 am she discharged me with no treatment and her only advice was reduce caffeine.......after I explained my low carb, low salt regime.

Now I'm not sure what happened, what I do if it happens again or if I should see my GP. I see my surgeon in 10 days time and I will tell him.

Valerie

[PMRpro Ambassador]

Next time (if there is a next time, hope there isn't) don't waste time with 111 - go straight for 999 and emphasis the "my heart began to race. I got up to sit in a chair feeling generally unwell with a hot clammy skin, and shallow breathing" - the tachycardia and clammy skin is important. Unless your BP monitor is one that registers a/f and the function is switched on it will give a false reading for pulse. I can't even FEEL my pulse when I'm in a/f. The a/f often leads to low BP because the heart is beating so inefficiently.

Paramedics travel with an ECG machine, even if they come in a rapid response vehicle, and they have a far better chance of getting a trace while it is still happening. The same happened to me recently - I waited too long to call them, I have had episodes fairly often and they don't last long usually nor do I feel particularly unwell - this turned out to be an exception! The paramedic got a trace that was "wrong" but by the time I got to A&E it was OK-ish. Since I have the diagnosis they weren't bothered - I'm on anticoagulant therapy which is the most important thing and I was sent home. My husband has almost permanent a/f but it doesn't seem to affect him as much as mine do me - he is also on anticoagulants.

If you are craving salt - that very probably means you need more salt. HeronNS has written about her experiences with a long term low salt diet. You can have too much of a good thing (or too little of a bad thing). Did they do bloods at A&E? If not, get your GP to (urgently) check your electrolytes. Salt craving can be a sign of poor adrenal function - that is fact.

This next bit is conjecture: I have been having a/f episodes when I get to 7mg pred. At 8mg they are less and at 9mg practically non-existent. Still waiting to see the cardiologist to discuss it but I have established by reading that vasculitis (i.e. inflammation) can trigger a/f - is that the link? Or is it the lower pred is low enough for me to suffer adrenal problems? The fatigue at 7mg is bad - combined with the a/f and its fatigue I can't function after a couple of days and give up.

[Valnvaughan in reply to PMRpro]

Thanks for reply. I seem to be coping very well with reducing Pred and have not noticed any difference in PMR symptoms as I reduce. However, I am overwhelmed by the hip pain and on a real cocktail of stomach protectors and pain killers with some mood enhancer to boot.......any of them have a whole list of side effects. I'm not on anticoagulant since 6 weeks after last operation. Surgeon says it will probably be needed when 2nd hip is sorted out.

Will follow advice and call 999 next time, hopefully never.

Valerie

[nuigini in reply to PMRpro]

Sounds strange PMRpro. I seem to recall you've been lower than 7 mg in the past? Your adrenals must have kicked in at that time. Hope you get answers soonest. I can relate to the fatigue. I'm struggling with it as I make another drop.

[PMRpro Ambassador in reply to nuigini]

About 3 years ago I was down to 4mg (which was OK) for about 6 months. Then I made the mistake of trying 3.5mg - deathly fatigue! I went back to 5mg and was fine there for 3 or 4 months - and then had a most peculiar flare that needed 15mg to manage the breathlessness and dipping BP that accompanied it, they were first and then the hip pain/stiffness started. I got back to 8mg OK but have had problems getting any lower. And the last 6 months or so I have got to 7mg and the a/f goes mad. The pred is the easiest thing to adjust and the rheumy is happy enough with 8mg (like his predecessor) although he'd rather 7mg. So yes, down to 4mg I was OK - but you really wouldn't expect serious problems before 5mg anyway. Who knows - cardiology in November...