I was diagnosed 8 months ago, started on 15mg pred and had been reducing relatively smoothly to 4.5mg (with some degree of ache remaining, never quite sure whether it should be nil or not, but it was stable).
A month ago, owing to difficult family circumstancs , my three grandchildren (8, 5 and a Terrible 2) moved in with me and are likely to stay for a further two weeks. Looking after them single-handedly is obviously stressful, they are traumatised to a certain extent, and one having been ill and it being the school holidays has not helped.
Unsurprisingly, with the stress, lack of rest and lack of actual sleep, my symptoms have got worse. I went back up to 5mg (not much more, I know, but so reluctant to have to backtrack) which does not seem to have made any difference. Don't think symptoms are continuing to get worse, though not actually sure.
What would you wise ones recommend I do re dose?
TIA
P.S. Icing on the cake is that the eldest came down with chicken pox yesterday
Written by
londonish
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Think you probably need to go up to 10mg initially - almost in line with the flare protocol we suggest - see link - and then you maybe able to drop back down in 2 steps to 7.5mg for a week or so, then to 5mg. Don't think 4.5mg was quite cutting it anyway [fast taper in my view] which might have been okay under some circumstances, but your comments suggest you were tottering on the edge before the recent stress.
As for eldest and CP - did you have CP as a child, if so be aware that the virus lies dormant in your body and there’s a possibility it could be re-activated as shingles. If that happens then you need prompt action from GP to get antiviral drugs. Have you had shingles vaccine?
Thank you, DL, that sounds very sensible. Have taken 10mg and feel better already. Just very annoying to have a setback. I might have gone to 4.5 too quickly but my markers were coming down nicely.
Yes, had CP as a child and no, no shingles vaccination. But I know to act fast and get anti-virals if necessary. I did see a paper somewhere that suggested that CP exposure actually confers a degree of protection against shingles. Will post link.
Thanks also for your support, PMRpro. Not really any practical help around, but at least the end is in sight . . .
Thanks again, and a happy and healthier 2025 to all
I agree with DL - you at least need to employ the flare protocol but I also agree that that was a very speedy taper and you don't sound to have been fully in control.
There is no shame in admitting that as a grandmother, looking after 3 children of those ages is an awful lot for you. I struggled in my late 40s and no PMR with our enfant terrible even for a couple of hours! I appreciate that over the last few weeks it will have been next to impossible to get some help and if they are traumatised that is also a problem, but is there no-one who can at least lift the burden of the other stuff - washing, cooking, cleaning?
And more bad news, if the eldest came out in CP yesterday, the other two could well also do so in a couple of weeks. Or they may be really unhelpful and develop it one at a time - or not at all if you are lucky!
Great practical advice from DL and PMRpro. I just want to express my sympathy to you. I’ve struggled since PMR with grandchildren of similar ages and in traumatic circumstances for them - but I’ve never tried to look after all three at once, on my own. I reckon you’re a hero!
Hope the chickenpox doesn’t prove too bad, and that shingles doesn’t ensue 🤞Rest as much as you can (which won’t be a lot, I’m sure) and deal with the PMR taper after things improve. Hugs xx
So very sorry to hear of all your problems L.Taking on children at our age is not ideal,but no doubt you have no choice.The terrible twos!.,😱Do not envy you one little bit.Was going to mention the risk of shingles but saw that DL has mentioned it.Please be careful,you do not want that on top of everything else.Think of yourself as well,( if you have the time!) and so what if you have to up the zprec.Health is more important at this time than a taper.Very best of luck to you and hope the family issues resolve soon .xxx💐😜
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