Mum had covid vaccine 2 weeks ago. She started complaining of dizziness on lying to sitting but not on standing. Otherwise fine. Massive deterioration this week with 3 controlled falls and then on Thursday inability to walk. She now has a skin flap tear from one of the falls.
I put her onto sick day rules Tuesday. Deterioration continued until Friday when suddenly all back to normal.
Endo nurses says I should have used sick day rules last week on slight dizziness but no-one said this prior. GP as useless as a chocolate teapot and told me to reduce steroid which I ignored.
I suspect she has had another flare as it took 2 days to improve - from previous experience increased cortisol works immediately.
we’ve had some short term input from a preventing hospital team which has been helpful but they don’t do medical follow up.
I think I am probably asking too much for an overview but it would seem common sense. In my professional role I would knock on the doctors doors, smile nicely and persuade them to attend a Teams meeting- that’s not going to happen as a carer 🤣🤣
one good thing is I did get my 2.5 mg tabs and endo nurse will be writing to GP ago request I am given extra pred for emergencies as this hasn’t been forthcoming. Mum also has been provided with a hospital bed which she loves as it goes up and down etc etc
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RT18
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Doubt it’s, very likely - departments may talk to each other behind closed doors [although that may be wishful thinking rather than a fact!] but not with patients or carers involved… even though it does make sense.
It will depend on the hospital - some can't even manage MDT care of their own bat!! But you DO have a good endo team and they are probably the ones to get involved on adrenal function ...
thanks. My problem is that in my mental health role I am very holistic. I would assume that when dealing with the physical bodily system each speciality needs to be aware of the rest - but perhaps idealistic thinking.
Anyway the endo nurses are excellent, but we are still waiting for a Dr appointment since her July admission- January is thr timescale.
She’s now been put on a week preventative abx for her leg so we are advised to stick to increased dose. That will take us past the 2 week at a high dose.
Going back down - would endo / rheumy taper be the same or do I need to be ahead of the game there?
Endo are also suggesting more of a circadian rhythms for the steroids which I think may help - I’m assuming that won’t affect any PMR type stuff?
Up to 10-14 days at a higher dose you can drop back to the old dose without a taper, we often suggest in 2 steps to make it more comfortable but you don't need to be slow. And the odd few days won't make much difference and it very much depends what dose she was on.
Not sure about the circadian rhythm bit with PMR/GCA. The entire batch of inflammatory substances is shed in the early morning and the best result in managing that is achieved by a single dose of all the pred in the morning. That is particularly important in GCA of course. If that morning dose isn't enough, it won't clear the inflammation.
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sick day rules due to covid. Sharing my experience. 
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