So, I've been on 20mgs of pred for 1 week, miraculous recovery then blew it by doing too much (roundly told off on here!)Now stable again and review in 2 days. Had planned to stay on 20 and reduce to 17.5 after 3 weeks following all advice and posts on here. Hoping I get support from specialist and GP for my plan.
Now I need to travel to Italy, as soon as next weekend but maybe the week after. If later is it best to stay on 20mgs for 4 weeks and reduce later given that the circumstances are obviously stressful and the travel as well. My sister and I are her only living relatives and she will not travel alone.
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Fatsiajaponica
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Near Rimini, hoping I can fly direct as Bologna to Rimini etc... may be a step too far, did this recently to visit as my symptoms were emerging, diagnosed the day after I got home.
Make sure you request airport assistance - even in a small airport, as you can end up hanging around in queues for passport control - or do you have an Italian passport? With airport assistance, if there are delays, they keep an eye on gate changes and where you need to be, no rushing for you to worry about.
You are likely to be looking at temps in the upper 20s/low 30s and many people struggle with sudden changes in temperature (from the UK to here) - PMR seems to mess up temperature control in the body at the best of times!!
How long will you be here? Will you just visit or will you be here as long as it takes? When my husband died it so happened our daughters were coming for a week but he deteriorated a lot in the 2 days before they arrived - and far further within hours of them walking in the door and seeing them. They had to extend the trip, Make sure you have plenty of medication with you, just in case. Spare undies are a lot easier to get than more medication"
I'm so sorry to hear the reason for your trip - but don't underestimate the effect such an emotional experience can have on you. You should be on plenty of pred to cope but I would be very wary of tapering with so much going on. The trouble is, your doctors may not be so accommodating.
Thank you, yes, I forgot about the temperature thing. I wasn't even thinking about airport support, will do. I think it will have to be a short trip and hope to go at the right time, really want to be with her at the end but this is impossible to judge of course.
I will stay on 20 and take plenty with me. I am sorry for your loss PMR. x
One thing I do, because I have extras, is take along enough prednisone to cover me in case I suddenly get GCA symptoms and cant get medical care in a strange or remote place. Yes I would treat myself if I had a sudden headache, visual loss, crampy painful jaw and a sore tender scalp. I would panic of course and take 60mg while I figured out what to do.
Update following visit to private rheumy today. 20mgs for another 10 days, down to 17.5 if all ok for 2 weeks, then down by 2.5 fortnightly until I reach 10 and hold for 3 months before moving on. The proviso is that if I flare (even minor) go back up to previous step until settled. Prescription issued to cover all of the above as well as medication for bones, dexa scan request to GP and review in 3 months.
Marks out of 10 PMR community (DL/PMR/Piglette etc...) for this plan (I thought it was ok and placed me in control).
I will ! Thank you. He was keen on this 2 week gap but heard me when I said I was staying on 3 weeks 20 and maybe 4 given the forthcoming stressful trip to Italy. What do you think of the 10mgs for 3 months, thought this was unusual suggestion. He did say to prepare for 12-18 months on these meds.
The 3 months at 10mg is a good idea…some Rheumy’s do this, or even longer… but it doesn’t seem to be that common. Plus treat the 12-18 months comment as a ‘wait and see’…
One reduction plan with good success keeps patients at 10mg for a year! Reduces flares from 3 in 5 to 1 in 5.
12-18 months - if you are lucky. About 1 in 5 patients manages that. Two weeks - bit fast but at least he is expecting flares and appreciated the significance.
And about that Italy trip - they are just telling us on the news that the rest of this week there is a heatwave, up to 40C.
oh dear, he did say something about the heat being an issue, that's much too hot for me although will stay with Air Con and hopefully the hospice/nursing home will have air con. Where are you based?
Right up in the north, Innsbruck in Austria is the nearest big city though Bolzano is similar. Even we, half way up a mountain, are expecting 29C! Been more like 15C the last week or two.
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