sick day rules again!

[RT18]

ground hog day!

last Saturday temperature and a weeks abx prescribed. No sick day rules to apply.

mild temperature crept back in yesterday- GP not interested she seemed much better as the day went on -

this am - temp 38.2 10am gone down with paracetamol, BP 88/66, weakness again. I’ve been shouting about potential adrenal issues but they don’t listen.

what do I say about sick day rules etc etc??

[PMRpro Ambassador]

With a BP like that you need something sorted out! Is it staying that low through the day? It is a long weekend - no GP, so I would try 111 and if necessary 999 and bypass her. Not many paramedics would be happy about leaving an octogenarian with that sort of BP and symptoms untreated.

[RT18]

Paramedics came out. Her BP settled to normal and temperature went down following paracetamol. We have more abx arriving and at home bloods tomorrow morning.

Nobody will touch the prednisolone. They have not heard of GCA or treating a potential flare or sick day rules.

We can take her in if we want but preference is home treatment. I don’t know how I get any sense out of anyone re the autoimmune stuff. Would she have to go in and see a rheumatologist?

I’m still not convinced the covid vaccine didn’t cause a flare. She presented like this with GCA diagnosis. Weakness, temperature- improved with abx - that carried on for a month before final GCA diagnosis

[RT18 in reply to RT18]

her symptoms are always worse first thing before prednisolone has got into the system. Would this be a ‘thing’. Ie she doesn’t have enough cortisol until the tablets have been absorbed

[PMRpro Ambassador in reply to RT18]

Wouldn't be surprised. Where do you live? Paramedics in Yorkshire have it included in their training according to my daughter who was a paramedic on the road and now an ACP in the ED - and they have a protocol for suspected GCA.

Given how unwell she is she should be on Sick Day Rules - especially given the dose she is on. I think an endocrinologist consultation is what you really need. But that won't happen this weekend will it!

[PMRpro Ambassador in reply to PMRpro]

And yes, the pred is out of her system well before midnight so until the morning dose gets into the system she is really struggling with getting up - 10am is very late.

[RT18]

Thanks. We are in Surrey. Every Dr has said they won’t touch the pred. I guess I will probably end up having to take her in to access endocrinologist but with her dementia / mobility we’re trying to avoid.

I have plenty of 5mg and am sorely tempted to slip her 5mg tonight and see if that helps…but they all have said no,

[RT18]

I can try giving the pred earlier - what would be the best time? I know others get up in the night - we’re usually up at least once in the night but not always at the same time .

[PMRpro Ambassador in reply to RT18]

If she is up in the night, it doesn't matter to an hour or so. And maybe the 7mg at least rather than the 6.5. I can't say what I would do ...

[PMRpro Ambassador in reply to PMRpro]

PS - is a private rheumy discussion an option?

[RT18]

thank you. I think I have decided what to do for tonight. Yes, we can definitely do a private rheumy and endinocrology if necessary.

[RT18]

I’m assuming if I follow guidelines from the society of endocrinology I can’t go too wrong.

[PMRpro Ambassador in reply to RT18]

I would have thought not. And since you are in Surrey, I'd suggest Rod Hughes at Chertsey.

[RT18]

Thank you. I will contact him for a discussion. If he is able to provide us with some clear sick day guidelines for the future, help us assess if this is a flare or not and provide advice on any future taper ( which I have quietly abandoned whilst GP isn’t fussed) that would be very helpful I think.

[PMRpro Ambassador in reply to RT18]

I think your primary problem seems to be a disinterested GP? Or one who just doesn't know enough ...

[RT18]

There is one good GP who gets it in the practice - but u have to wait for weeks, but I will request him again. Unfortunately her named GP who called us back yesterday doesn’t get it at all. She initially told me to taper 1mg every 2 weeks and I had to point her to discharge summary

. It’s complicated that she can’t just run out to appointments, needs home visits and can’t communicate that well.

My real annoyance is that they don’t listen to me BUT when I call the same GP in my paid role as a mental health worker they DO. I haven’t yet pointed out that they speak to me in both roles but maybe I should.

Yesterday she just told me constipation causes confusion. Which of course I know and have made sure mum isn’t constipated.

Anyway she is fine now and as normal 🤷‍♀️🤷‍♀️ so it’s looking likely in my eyes with the evidence I have that her cortisol levels in the morning pre pred dose are currently not enough. We do have a community team coming to take blood tomorrow and I s

[PMRpro Ambassador in reply to RT18]

Oh I'd pull the colleague card - always makes a difference,. It shouldn't, but it does.