I am down to 4.5mg Prednisolone. It has been up and down but OK. Two weeks or longer on this dose before I even start trying for 4mg.
Yesterday I took the train for London for a DEXA scan and BT prior to seeing Rheumy next week. It was awful. The train was crowded with snotty coughing kids - standing room only towards the end! Stressful. I needed water. I felt wobbly and sweaty. Vision also swimmy. Had DEXA feeling weird. Nurse at BT said blood very sluggish which is odd as I am on blood thinners. She said I was very dehydrated and gave me a bottle to drink and said rest. I did for a bit but had to get on as was meeting a friend. By this time I was not thinking straight so stuck to plan. Felt I needed salt so had a packet of crisps. I think I was a bit better. Met an old friend at the RA Summer Exhibition. We laughed a lot but I really couldn’t see anything clearly which was a pity as some of my artists I frame for were exhibiting. Horrible train journey back with lunatic karaoke enthusiast sitting opposite and a spluttering teenager across the way. Felt I could be dying? Had drunk lots of water but really felt very discombobulated.
Still feel a bit silly after restless night. Is this ai? Perhaps heart? Perhaps PMRGCA? But I don’t hurt. Luckily seeing an Opthomologist on Monday as eyes have been odd for a while. However no shooting pains as there were with GCA.
If you drink lots why are you still dehydrated?
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Sorry to hear you a had such a difficult day… but sounds as if you tried to cram too much into it.
Would say the majority was down to adrenals not managing to cope with added activity and stress…have a couple of really restful days. Then after your ophthalmology appointment Monday re-evaluate and speak to GP/Rheumy if required/possible.
Thank you. I suppose getting a train is stressful! It certainly was yesterday. But really! I know - 🥴my body can’t cope as it used to! This condition sure does rob you. Does ai cause dehydration? I will discuss with Rheumy but I’d love to know if others have reported dehydration.
And thank you. I hope you know what a comfort it is to be able to dial in.
I'm on 5mg, and even the slightest bit of stress makes me feel very wobbly at the time - and that was a long time to be under stress. That was a lot of physical and mental stress - including the noise - and like DL I'd say it was struggling adrenals. The desire for salt is typical. The thought of 2 train journeys like that is enough to make me very pleased I drive everywhere and avoid places I can't at least drive most of the way and then you did all those other things too.
When you say you drink lots - how much and what? It isn't just water you need - you need electrolytes - the sort of stuff you get in the drinks runners use called isotonic drinks. There are loads on the market and if you google you can find how to make your own which you can make without artificial sweetners and less sugar since it is the other stuff you need rather than carbs to go running or being a gym bunny.
Thank you Pro. Lots to read. I couldn’t think straight yesterday. I think it must have been ai. I felt sick too which is ai, isn’t it?
I do drink enough I hope and take magnesium and potassium supplements. I was low in potassium in one BT. I am concerned about over doing it as I believe that can be equally bad. I also wonder about Afib though when I found a quiet corner that wasn’t positive on the Kardia. Also GCA stays in the back of the mind especially with the swimmy eyes.
I am just concerned about being so dehydrated for no reason I can see. I have stopped alcohol, careful about coffee etc. etc!!
That sort of day on 4mg would have put me in an ambulance. A simple trip to the local supermarket was enough to make me feel shaky. I found I couldn’t cope with lots of movement and my eyes having to keep tabs on lots of moving parts like people.
I am on 4.5mg and certainly wouldn't have coped with your day!...Noise seems to very big problem for me too, it can cause me to shake....my OH is a very quiet man (thank goodness) but is losing his he aring...theTV is too loud for me!....I have been out twice this week, quiet days near the broads, even that has causedme to feel very wiped out......but my head needed it!
No. I will see what Rheumy says. I do hope I can get back to a more normal life except going on a train the first day of the holidays is best missed by all. How long have you been on 4.5?
Several months now. I have felt so weak and ill blurred vision prevents me from driving so no independence! I have muscle pains now in my legs and a swollen red left foot, that has been coming on for the last couple of months, always something new!
Had a few cortisol tests which have been low. Now waiting for last week’s results of full blood tests and cortisol. Hope you get some answers.
Oh I am sorry. I know we are lucky we don’t have Parkinson’s and MND etc -God forbid but this is a tough ride. What was the last dose you were happy with? I have thought about going to 6mg for two/three days then straight back down to 4.5mg. But if holding out and putting up with it is best - so be it. See what Rheumy says on Tuesday.
In the UK at present I'd say trying to go on a train at all was best missed - and doing anything on the first day of the holidays ranks alongside! And you put them together!!!
I'd be inclined to try the 6mg any time you are intending over-stretching yourself like that. Once a week would make no difference to the return of adrenal function.
Ah. I will. I have to go up next week again and the BTs will have been read. The school holidays just didn’t connect in my mind. Perhaps next week everyone will be abroad - unless of course their resort is no more. It is so crazy.
Thank you Pro. I am pretty sure what I experience yesterday was ai. Not heart or a flare. I am pretty wiped out to day but no longer worried.
Oh dear. Would your husband have a hearing test and use hearing aids? My husband has just started wearing them and getting on really well with them. Makes a big difference. Or you could put subtitles on tv for him so volume can be normal. I know some people stay in denial about hearing - it can be tricky!
We were walking into town one day and passed a hearing aid shop with free hearing tests - so I had a paddy and insisted he got the proof for his claim his hearing was fine. He was taken aback by the audiology graphs - he was a physicist so could see what was lost. They cost a small fortune, no NHS subsidy here, but it made my life easier. And because the audiologist told him he must, he wore them!!!
Exactly in denial....it says in the paper today the millions who need h earing aids, but won't admit it....I'm f ed up talking louder!Did y our husband buy them from where he was tes ted?
Yes, tested free at Boots by an ex nhs audiologist who was excellent. We paid for private ones - expensive but amazing how good they are. Good aftercare too. They can set them on a computer for various backgrounds eg cinema or noisy restaurant. He can also adjust them on an app on his phone. Amazing technology. He’s pleased with them. The hard part is accepting you need them, but these days they are very discreet. Strange isn’t it - a lot of people accept glasses but resist hearing aids for some reason.
I think my husband left the shop that day with a trial pair ordered - he needed to wait for the earpiece though because of the type he needed. We are talking of at least 8 years ago, lots has changed since then.
This is really interesting re noise as I was only saying to my daughter last week that I have suddenly become very jumpy at loud noises where I wouldn't have before, ie something on the telly etc, even if I know it's about to happen...
It’s horrible, mine dosen’t even have to be loud. I think it must be the nervous system. I felt shaky last week with a bit of a shock…. My close friend took her husband to A&E with severe headache and bruises, he was diagnosed with Leukaemia, she had just emailed me the news, went into a shop a man had just hit the floor, thought he was dead, blood everywhere, couldn’t stop shaking, that’s where adrenaline comes in I’m sure, what a battle. We need the quiet life!
I suppose 7 mg, but always under 10 mg extreme fatigue, my legs feel like they weigh 20 st each!….Pretty sure it’s myopathy of some sort!
Sitting in my summerhouse right now, garden looks the best it has in all the 32 years we have lived here, so some consolation, and OH is now bringing me a cuppa! So must be grateful for the small things. 🙏
Yes the small things are so important. They give hope. I see you can’t be 70yrs yet. That is hard. I had a really furious moment yesterday when struggling that my early 70s should be so blighted! I had been active before. I learnt yesterday that I had put on 8kilos in the last 4years! WTH! But today I don’t feel quite so bad. I/we /you will get there. And perhaps we see and appreciate things like gardens more acutely because of the restrictions?
I know from the BTs that I am loosing muscle all the time, though I tested negative for myopathy. But what can we do? Good luck with your results. I hope they shed light for you. Do share if you don’t mind.
Will share, and I’ m 72 in September! Can’t believe I’m saying that, but grateful…. both my parents died young with cancer. What tests did you have for Myopathy?
A Myopathy Blood Test taken by my nice new GP. It came back with a long list of enzymes all negative. I had been complaining about my muscle spasms. Looking back on that time with the knowledge gathered here I think I was experiencing claudication with a flare. They went when I went to 10mg.
Well I have to go up on Tuesday again. This time I’m going to up my pred, probably to 6mg. I am still recovering and am slightly concerned I could have triggered another flare. I take vit B 12 daily almost. I’ll try the complex one. Thank you.
I live in London and last week although the temperature wasn’t very high the humidity was high and I found it very uncomfortable, wondered if this had a bearing on how you were feeling. It’s 19c today but humidity is 62% so feels a lot warmer. I don’t use public transport much these days as it’s far too crowded. Whilst out stopping yesterday we drove over Tower Bridge and can’t remember last time we saw so many tourists on the bridge. Haven’t seen so many visitors to London since before the pandemic. It seems a favourite destination once again. Hope your trip on Tuesday will be less busy.
Thank you. I’m sure you’re right. I hate being so delicate. I used to be proud and confident that I could cope with anything. I’m still prepared but my body definitely isn’t!! I’m going to up my steroids next Tuesday and see if that helps. As SnazzyD said ‘too many moving parts’! That explains it exactly.
We did 3 hard days in London, 19/20/21. Should have been 1 but train strikes made us stay over each side. Still shattered. 9th UTI of the year did not help. Hope you feel better soon.
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