Follow up to my last post about nausea & unable to eat.

[strawclutching]

Hi again folks.

I posted 16 days ago about feeling weak, nauseous & being unable to eat plus my reluctance to go to A & E as I'd been with similar symptoms just a couple of weeks before. However, I did go to A & E where I was admitted after a blood test confirming low sodium levels (again) and a really bad UTI (again).

It was the Friday before New Year and there were hardly any staff to cope with the patients. Many were agency who either didn't speak much English or were quite impatient when dealing with the elderly. Dementia patients weren't fed, their meals chucked away, their tablets ending up on the floor.I was moved from an Assessment ward to a ward with patients recovering from pneumonia and other chest infections, etc. And there was me with no immune system. This was at 1 a.m; then someone from the pharmacy visited me at 1.30a.m for a list of my medications. After that I was given a menu to complete at 2.10 a.m. They came with my famotidine (ant acid med) 2 hours after they brought me my breakfast, which I couldn't touch until 11.am and also my Pred at that time. My insulin didn't arrive until before lunch. Then they wanted to give me the wrong dose. I had to bring my daughter out of work 60 miles away to collect my own meds from home. Then they decided I needed an extra 2 units of rapid acting insulin twice a day - because I was on steroids, they said. I told them I'd already allowed for that since I've been on steroids over 3 years but they insisted on giving it to me. I had a hypoglycaemic reaction.

My first blood test on Tuesday this week since being discharged showed low sodium (28) again but was marked as 'normal' by whoever assessed it. Since the nausea had already returned I phoned the GP and they eventually agreed to do another blood test tomorrow morning. I've been eating salted crisps trying to get the sodium up again, but if this is something ongoing, does anyone know what may be causing this? When I was in hospital, they changed some of my meds which they viewed as sodium lowering but the changes haven't made any difference. My weakness has continued, and I've been unable to do anything other than open tins to eat. I now wear a back brace to support my spine. I noticed after standing a short time I develop a bulge at the base of my back which could be spondylolisthesis from osteoporosis. I did injure my back 2 months ago when I was trying to fit a corner of my mattress into a fitted sheet. The pain has been excruciating, but easing now with an occasional numb leg. Had to cancel my physio appointment as I was in hospital, so I'm overwhelmed with everything that's going on. and my daughter thinks I need to move somewhere without stairs. Any ideas or comfort greatly welcomed.

[piglette]

Could you have caught the Norovirus? A lot of people seem to have it at the moment.

[strawclutching in reply to piglette]

No, definitely not. I had these symptoms 2 months ago but they were resolved when my sodium levels got back to normal after being on a saline drip.

[PMRpro Ambassador]

Think your daughter has a point - you need to move, whether it is to abandon stairs or just find a hospital that is in a better status is debatable!!! But no stairs is lovely - I'm on the second floor but there is a lift and no steps in the flat itself! Currently exploring future-proofing a return to the UK with one daughter and her partner broaching the subject over Christmas. I'm not ready yet but I know I need a safety net for 2 or 3 years down the line at the most. As long as I am fully independent where I am is fine and I love being where I am but I know what is important - have done it before with a MIL - so we are looking at options for a place with possibility for a granny-flat so it is there when needed/

I have just spent a planned few days in hospital - on admission they arrived to tell me which if my own drugs they needed from me and I asked if I could keep my meds myself so I could be accurate with the timings as it is critical at 8,30am and 8.30pm. No problem, all they did was come at the drug round to ask "have you taken ..." and tick it off on their list. There were a couple of added extras and they brought them to me. All went like clockwork.

But to your current problems: have they looked at adrenal problems? What dose of pred are you currently on? Has that lower spine problem been investigated with imaging - not just a physio appointment?

[whitefishbay in reply to PMRpro]

Your hospital sounds like paradise. I queued up for an hour waiting for an xray of my feet (after ten years of arthritic feet). Had to remind the receptionist I was sitting there (they forgot me). ..luckily it did not matter...

[PMRpro Ambassador in reply to whitefishbay]

I wouldn't go that far but they aren't bad! Rheumatology is a paradise ...

[strawclutching]

Your hospital visit sounds like a dream compared to mine. I'll know what to take with me next time. I'm currently on 16mgs Pred - slightly higher than the 14mgs I was on before the UTI. The UTI's tend to occur so often i don't have much of a chance to get going with a taper. i still haven't had my face to face with the physio, only a phone appointment and no proper imaging of my spine. Could the physio arrange that or could the GP? I have a telephone appointment with the GP tomorrow.

[Pixix in reply to strawclutching]

When I had an MRI of my spine it was a consultant who requested it, & saw the results & discussed them with me (I have a benign tumour which is too close to the spine to be operated on without a high risk). But the GP will tell you the answer tomorrow, I’m sure. Good luck, S x

[strawclutching in reply to Pixix]

Thank you Pixix.

[PMRpro Ambassador in reply to strawclutching]

Shouldn't be adrenal insufficiency then - enough pred to make up for that.

However - the UTIs are a problem and I did link an article beck before Christmas. A new opinion trend is that peri/post menopausal vaginal dryness predisposes patients to repeated UTIs and can be a killer. The medical article I linked isn't working but this is the Guardian article written about it at the time

theguardian.com/society/202...

Maybe you can get your GP onside and at least TRY that approach?

[PMRpro Ambassador in reply to strawclutching]

And a bit of lateral thinking led me the fact that hyponatraemia is often found alongside paediatric UTIs - if it happens in children, why not in adults? No doubt there is an opinion but I still say - why not? And a group of Korean researchers bascially say the same

e-cep.org/journal/view.php?...

They mention that IL-6 - the significant cytokine in PMR and GCA - is associated with hyponatraemia and say "we hypothesize that hyponatremia may be associated with inflammatory diseases in general".

As a start - I think they need to look at the vaginal atrophy/dryness link and try improving it. And is your autoimmune inflammation well managed? Because that may be contributing too!

[strawclutching in reply to PMRpro]

That is so interesting! I addressed the vaginal dryness a couple of years ago with my then GP and have been using Estradiol pessaries twice a week ever since. Also, I use Replens moisturiser as required. The clinician who did my cystoscopy over a year ago remarked how well they were working on the 'slipperiness' as he inserted the cystoscope - I was rather embarrassed, but good to know! So dryness doesn't appear to be the cause. Both my ESR and CRP were pretty rock bottom at the last test just this week. I think maybe I should be rereferred to urology and ask about a long course of low dose antibiotics, as this has helped my daughter overcome her frequent UTI's for several years afterwards.. but the link between UTI's and hyponatremia is really good to know and to be aware of in future. The GP told me that my sodium levels were only 120 while I was in hospital, so now they are at 128 they must be improving? I can only hope this is the case as I still feel pretty rubbish at the moment and have done for a couple of months now. I have some more antibiotics on the way so fingers crossed and i will get around to arranging the physio appointment as soon as I'm feeling better. Thanks so much for those articles. You are a great source of information, as are many on this forum and I appreciate you so much!

[PMRpro Ambassador in reply to strawclutching]

Have you tried D-mannose for the UTIs? I find it has quite a magic effect - not cheap, but worth a try though as you are diabetic you may need to be careful, But of course, diabetes also influences UTIs.

[strawclutching in reply to PMRpro]

Yes, I've been taking D-mannose for over a year now. I've changed to decaf tea, no coffee, no alcohol, no artificial sweeteners to aggravate the bladder. Can't think of anything else I can do really other than get off the Pred and at least return some of my natural immunity which seems to have crashed completely. The infections of course stop me from doing that while they occur so frequently.

[PMRpro Ambassador in reply to strawclutching]

Yup, definitely a vicious circle.

[Sharitone]

Cold comfort, I know, but your experience isn't so different from mine in Bournemouth A&E last year. Fortunately, our GPs are much better.

[strawclutching in reply to Sharitone]

No wonder people are put off going when they're desperate for help.🙄

[PMRpro Ambassador in reply to strawclutching]

My daughter doesn't get the impression people aren't going to the ED! Though she did have 2 occasions on nights last weekend where there weren't any ambulances queuing ...

[strawclutching in reply to PMRpro]

I don't have any insider knowledge like your daughter, but I just listen to the oldies on my estate and how they feel reluctant because of their recent experiences. It's not just the long waiting times but what comes after being admitted. The younger ones who are generally only there with minor injuries that can be dealt with there & then seem happier to attend than us oldies.

[PMRpro Ambassador in reply to strawclutching]

And quite a lot of them needn't be there if they looked after themselves like we all got used to doing. And that is the problem - the people who NEED to be there tend not to go as they don't think it is serious enough.

[strawclutching in reply to PMRpro]

I think that's true. I try not to generalise, but most of the young ones in the waiting room sitting around me had friends with them, laughing over videos on their phones, dropping their phones on the floor many times - (so annoying when you're feeling genuinely unwell), raiding the vending machines for a good nosh, etc.

[PMRpro Ambassador in reply to strawclutching]

Exactly - and if they can mess about like that it rather begs the question how they can claim 9 or 10 on a pain score!!!

[strawclutching in reply to PMRpro]

I know! Wish I had that much time to waste and I wouldn't be spending it in there.

[Mfaepink1973]

You can apply to your local council for a Disabled Facilities Grant which in my area is not means tested and when my late husband couldn’t manage the stairs a stair lift was installed free of charge. I contacted the Occupational Therapist (usually in same office as Adult Social care) and she organised it all. It’s worth considering rather than the upheaval of moving house.

[strawclutching in reply to Mfaepink1973]

Thank you Mfaepink. i have a lot to consider at the moment.