what to do next?

[RT18]

Thanks for the support with my mum the past few weeks. It’s much appreciated. The last time I posted she had a temp of 38.2, struggled to move and had a v low BP. After a paramedic check up, 2 paracetamol and 7mg pred she was good for the rest of the day 2 hours later!!Mobility restored to around 60/70%, temp stayed down, BP remained low all day but back to normal next day. Something similar had happened the previous day - temp not as high & mobility not as much reduced.

Urgent bloods were done and more abx prescribed.

no sense from OOH GP about sick day rules so I followed society of endocrinology sick day advice and put her on 5mg pred twice per day.

Even before the ABX had been organised the difference was amazing. Mum was walking / mobilising the best she had done in weeks and more bizarrely her speech which had been getting confuddled for the last few months has massively improved over night. She had gradually been losing words, getting her sentences mixed up and going round in circles as would have been predicted for her dementia diagnosis. She’s also started to show interest in looking at books, and magazines again which had slowly declined - again I assumed due to VD. Nothing dramatic- all gradual decline - reversed overnight seemingly.

when I had previously asked her if she was in pain she said ‘not really’, now she says ‘no’. Not really therefore means yes I think!!

bloods showed WBC 11.2 ( her WBC always raised since on pred), ESR 43 and low sodium.

So abx stopped today and I should reduce pred back according to the sick day rules. But I am more convinced now she has either had a slow build up inflammation brewing which was exacerbated by covid vaccine and / or adrenal fatigue. So I am worried about dropping the pred too soon and just having to increase it again.

We have a consultation booked with Rod Hughes on 30/5, but the GP is coming round next week. The GP is nice but doesn’t seem aware of GCA apart from the visual stuff.

My gut is to keep her on 10mg until we speak to Rod Hughes and then can follow his instruction. If he wants to start a taper I would want to do 0.5mg DSNS as 1mg drops were too much last time round. She seemed to get dizzy & faint sometimes after drops. I’m nervous about what this GP will say next week. She had previously told me to reduce 1mg a fortnight which I argued against knowing that was wrong. We have plenty of pred in stock. Although mum can make basic decisions regarding her healthcare she can’t cope with the above intricacies so I do feel a weight of responsibility.

any thoughts or similar experiences? Thanks in advance!

[PMRpro Ambassador]

If I were you, given how much better she is on 10mg pred, I would insist to the GP she be kept on 10mg pred.

My suspicion is that she has a degree of inflammation somewhere that is affecting the blood flow to her brain and the pred has improved that blood flow so also improved cognitive function. I went through something similar with my husband and the GP and local hospital were useless. In the end one of the doctors mentioned palliative care - and he was referred to them. The local palliative nurse arranged for him to have a short stay on the palliative unit in the main regional hospital, the only unit there was at the time. On the first day they gave him a dose of dexamethasone - it is used in palliative medicine to stimulate appetite and he was eating nothing, I had asked about it before - but here patients are not encouraged to know anything! By the next day he was able to phone me and have a sensible conversation - the first for months, He started eating and he said himself he felt human again. It was too late to reverse the downward spiral he'd been in for over a year during Covid but he had nearly 2 really good months, able to use his computer and sort things out and we went for short walks and even for meals, And, above all, he managed to keep going until the girls were able to visit to see them one last time.

In fact - I would ask if you can have palliative care involved with your mother's care. They use medication differently. She is 83 and has dementia - there are no cures so this is a case of helping her live as best she can, If 10mg pred does that, I would say that is what she needs.

[Purpleazalia]

I think you're doing a brilliant job of caring and advocating for your mum. In my humble opinion, your observations and reasoning are 2nd to none.

If I were in your situation I would be following my gut too - 30/5 is only a couple of weeks away and you'll be getting an assessment and a GCA care plan from someone who specialises in this area.

[123-go]

I so agree with the others that you are doing the best for your Mum. You know her better than anyone and your decisions have worked. Why upset the apple cart? Stick to your gut and your guns, RT18. Would it be possible to ring the rheumatology department and ask that Rod Hughes support you in your wish to keep your Mum on 10mg pred at least until you see him? This would surely overrule the awkward GP.

You have my admiration and respect.

[RT18]

thanks all so much for your advice and encouragement. I shall stick to 10mg and hopefully Rod Hughes can take us forward and give clear instruction that the GP will follow.

It can be an isolating experience as a carer but this forum and the Alzheimer’s Society dementia equivalent are life savers!

I’m so pleased to hear that the dexamethasone added quality and time to your husband’s life PMRpro - you can’t put a price on that. I shall enquire about palliative care - I don’t see it mentioned in the dementia forum until people are actively days from dying - but mums dementia does mean we would want a different approach to her GCA. I personally can’t see the point in putting her through all the adrenal re-awakening. Her goal is to remain as mobile and ‘with it’ for as long as the dementia allows- if accumulating pred causes problems when she is bed bound and unable to communicate but she has longer now to enjoy life then we would be happy with that pay off - as would she!

[PMRpro Ambassador in reply to RT18]

My point exactly - and no, palliative care is NOT just for for the end of life pathway, it is to make the most of the whole journey for any incurable situation, you may be under palliative care for months, years even, and even while still receiving some forms of treatment since there is palliative chemo and radiotherapy to minimise symptoms in cancer without aiming for a cure,

caringinfo.org/types-of-car...

Personally, I think the biggest difference is in the use of medication - if a higher dose of steroids is improving her QOL, then a good palliative care doctor will use the steroids without messing about reducing the dose because she might develop osteoporosis or other adverse effects, They also stop worrying about patients becoming addicted to painkillers or whatever. When the patient is comfortable and calm, so is everyone else and your life becomes easier too. The palliative care doctor usually has a different view from the physician on the normal ward - their aim is to cure and often they will do all sorts of things that don't really help QOL while aiming to attain that cure.

[RT18]

thank you - I realised palliative care could be for a long period but I didn’t realise the use of medicine was different - but that makes perfect sense! I will do some asking / digging around in this area. Thanks for all the wisdom here - much appreciated