Some advice please
I have bee tapering quite successfully and am now on 8mg, due to go down to 7 mg on Monday 18th. I have been feeling very well. Went to bed last night at 11.30, and felt well. I awoke at 1.30 am with pain in the left side of my head,not constant pain, more waves, and nausea. I took some paracetamol, didn’t help. My question is should I increase my medication and treat as a flare?
Grateful for any advice
Thank you
As you have got down to 8mg with 8-9 months with GCA, then you have to seriously think it could be a flare.. until proven not. If paracetamol didn’t help then I’d be inclined to try the flare protocol contained in link below -but if you don’t get a significant change within a few days, you need medical advice. For GCA you may require a higher dose than normally.
healthunlocked.com/pmrgcauk...
Can I just say, from now on once back on track only 0.5mg a time and maybe use one of the slower tapers we talk about.
The lower you get on Pred, the slower you need to go -for your GCA and your adrenals
Please let us know how things go.
Thank you so much. I have already taken an extra 5mg this morning,13mg. Should I continue on 13 mg for 7/14 days, if all is well go back to 8mg then reduce by 0.5 every 4 weeks? I may have brought this relapse on myself. Went into town, Christmas shopping, on Tuesday. Missed the bus and had to stand at bus stop in a freezing fog for 45 mins. Trapsed around shops carrying heavy bags. At least I got most of my shopping done 😅My daughter is 55 married with two grown up children, owns her own business and still has to have a Christmas stocking.
Oh flip, I have just realised I'm feeling much better must be the medication working. Yippee!!!
Thank you again I would be lost without you all. Sorry for waffling xx
Waffle as much as you like! And yes your idea does sound good - but just make sure you do feel better. If not, then back to us or doctor for more advice..
.. and drop back to 8.5mg or maybe 9mg - and stay for a month before tapering. Plus remember Christmas although enjoyable can be stressful too (as well as the run up) .. so maybe no reducing just before. I never did!
What’s a week in the great scheme of things…
Absolutely…….
Your advice DorsetLady is much valued and appreciated.
My GP has more or less admitted that she doesn’t know much about this disease…….
Take care x
Oh dear, that kind of activity is really hard on the body when you are on this journey. One of the hardest parts of this is having to reduce being the person who does things, is reliable, keeps everyone happy etc etc. Christmas is a real danger time for that.
Your right of course, hopefully live and learn. That's it I'm done ! Bah Humbug from now on........😂
Bah humbug indeed! Leaving the country for Christmas was a wonderful discovery!! Here, today, I sat in the sun for 4 hours with a friend drinking coffee, hot chocolate and an Aperol spritz - outside temp started at 3C and rose to the dizzy height of 7C, winter coat and a blanket in the sun, no problem! Opposite they were building the Christmas market - doesn't open until the 29th but they were already hanging baubles in one stall! I will, as usual, be alone for Christmas so will probably go for a pizza if not invited out which may happen again this year. No skiing - that was our usual 25th pastime. So much better than the hassle that seems de rigeur in the UK!!
That sounds delightful, love Italy. One thing missing though, a wee glass of prosecco. Have been threatening to go away over Christmas for years. Pizzza sounds good
Yes! I am away for the whole winter in my camper van (with my partner though, not alone). Not only warmer (the UK has been constant wet and cold all year) but a pared down, simple lifestyle, lots of fresh air and motivation to exercise, no Christmas preparations or pressures. No indoor socialising (or refusing to). Sometimes we cannot make changes (and people around us are resistant to us making them) without a bigger change such as leaving an environment and 'cutting off' for a bit.
Our 2024 has been bizarre with weather too here in northern Italy!! Either 3 or 4C too cool or too warm and WET! I fled in July and August because even here in the mountain we now get 3 or 4 weeks of temps over 30C and that is too much for me now - and what did I get? The coolest summer in the UK since 2015! Just a few days you could call summer - although I was able to sit out on the south facing "balconette" on the steps outside the french windows for morning tea a few times! If the sun wasn't behind a cloud it was OK!
Where do you spend winter? I considered investigating Sicily this year but not sure about temps at New Year in a VW California - not really living in space in poor weather, even for one.
Currently Sardinia (shorts and tshirt). Boat to Sicily tomorrow until mid December, then Morocco until end of Feb, Spain until Easter. Understand space and poor weather, especially rain, impossible to dry things. Our van does at least have toilet/ shower and we do the washing only when we know it will dry before bed (today - after 3 weeks away🤣). I've got fleece lined trousers and have a long 'snuggy' thing+ blankets to extend time outside - and enjoy the night sky with a glass of wine.
Our big van had it all but OH wouldn't go away in the winter and we sold it when he was ill during Covid. No good to me now anyway so it was the expensive but small VW option! I do have a loo for emergencies!! Hope Sicily stays dry for you - awful again last week.
Yesterday I sat outside in the sun for coffee etc with a friend for 4 hours - winter coat and a blanket supplied by the cafe in the sun was enough despite 3C to start and 7C to finish ...
Any advice please?
Advice please
Advice Please
please can I have some advice
Advice please!
