Pred dose timing and travel

[SnazzyD]

So here's a conundrum about considering my reductions with a holiday in mind. So, in 13 weeks I've got to 20mg. My last drop of 2.5mg was 2 days ago, so I still have withdrawal to come on day 3/4 and symptom wise I now leave at least two weeks before I even think about relaxing. I intend to make make my next drop a 2mg step but I'm feeling that I'm getting low for GCA now so am warier regarding rates. I think I'm 'supposed' to be on 10mg by now according my Rheum Reg!

Anyway, in 8 weeks' time I'm supposed to be off to Rome and the Western Med on a cruise. I feel very fortunate but know the travel at each end is going to be very stressful. Without doing any maths or projections, what dose would you suggest not going below generally speaking? I know I won't be at the crunch point for challenging function properly but I'll definitely be challenged physically and am trying to be realistic about what I'll manage on this holiday. I hoping that my increasing tendency to motion sickness that has been cured by Pred will stay away. It has been miraculous! Whether it was GCA related I don't know, but even being driven a few miles made me feel odd in the end.

My other question is timing of dose. Currently I take enteric coated Pred at 6pm, wait until 8pm to eat (that fits nicely for hols). I go to bed at 10-11pm when I start to feel groggy with it. Now, if I am on a lower dose and I'm having relatively stressful days, could my steroid dose be getting too low by day to carry me through? Is it worth changing my timing to morning and try to put up with the grog by day which hopefully won't be as bad any more? I am assuming I will have to make the switch at some point anyway, just for daily life when my dose gets lower. I think the enteric coated blood level is more spread because on the occasions I took the ordinary Pred I felt it 'running out' by the end of the dose day but with enteric coated I don't .

Any opinions for the melting pot gratefully received.

[DorsetLady PMRGCAuk volunteer]

Hi SnazzyD,

I think considering the rate you have decreased so far, it maybe a good idea to slow down a little now. Good idea to change to 2mg, but I wouldn't consider dropping just before holiday, and definitely not on it! No matter what Rheumy Reg thinks you should be at!

No matter how much you enjoy your cruise and try to rest, it will be stressful, holidays and change in routine always are. Personally, I never reduced just before holiday - two weeks prior maybe, but no closer, and stayed on that dose until I got back home and settled again. Most people are only way for 2-3 weeks so doesn't put you off track for too long. If fact when I went to NZ for 6 weeks didn't reduce then - was at about 7mg and much further along than you.

Some increase their dose before a trip, but I don't really recommend that, just take extra in case required.

If you're medication routine works at present, stick with it on holiday. If you find you're "running out of steam" dramatically, then you can always try a extra mg during the latter part of the morning or early afternoon. You won't know until you're in the situation. Plus you can always have a rest during the afternoon! I know you want to get the most out if your holiday, but you still have to remember the pacing!

Most of all, get any assistance you can - and enjoy!

[SnazzyD in reply to DorsetLady]

20mg was my pychological goal but am very aware that with every drop I'm less protected from GCA. I've averaged about 6.6mg per month. I want to do the 10% now and increase the two week gap in between. I should still be in the high teens which I hope should be ok for oomph, but I hadn't thought of the extra boost. Perhaps 1mg of ordinary (for quick effect) Pred shouldnt upset me too much.

I think I now know the difference between withdrawal, inflammation and the head pains I get with my cyclical Neutropaenia every three weeks which has now become more evident with the lower doses. I think the stimulant effect on the Neutrophils has reduced and my three weekly drop is noticed. I've been enjoying dizzying heights of 4 instead of 1.5. Eye socket and cheek bone pain with a headache is one feature similar to GCA but it has a different 'flavour'.

A cruise is about the best holiday I could have. It is the only holiday that I have ever felt that as a mum I actually rested and recouperated . I also have a hospital below decks. But, yes, it is stressful getting there and off ship and it'll be HOT, most afternoons will be 30-40C so morning trips only. Afternoon naps are non-negotiable anyway, my body sees to that.

Good point about not changing something that's working. That's also good advice about the pre-holiday drop. I'll make sure it is more than two weeks before as that is my bare minimum before I even start to think that I've 'got away with it' after a reduction, barring other causes.

Just need to keep my father-in-law and the dog on an even keel long enough to get off UK soil. Now that's causing stress!

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Yep, there's always a lot going on before you actually get on holiday.

My son, bless him, once said to me about going on holiday "all you need to remember is your passport and credit card"!"

This from a man, whose wife organisises his family holidays and PA organises his work trips abroad! Don'tcha just luv 'em!

Take care.

[SnazzyD in reply to DorsetLady]

Ha ha😂. That sounds familiar! The family think I'm getting over stressed because I'm still frothing at the mouth when they say they have packed their suitcases, so what's my problem? A full audit usually shows up big packing failures and if it is a self catering holiday it is the tip of the iceberg. The first day or two of holidays is usually trying to source indispensable items from non existent shops

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Yep - again. Forgot to say earlier, be more aware of sunshine if you're out and about. You're still on a high dose of Pred, and the two don't always go well together!

But I'm sure you're already aware!

[SnazzyD in reply to DorsetLady]

I had heard but just how easily I'd burn was unknown until I learned by experience recently!

[PMRpro Ambassador]

I certainly wouldn't change a tried and tested routine before going on holiday! And yes, the enteric coated dose is more spread and it also never reaches quite as high a blood level as plain pred, sort of a slowly rising road that then goes down gently rather than climbing a cliff and falling off...

Really don't know what world your rheumy is living in - GCA and getting to 10mg in 13 weeks???? When there is study evidence that there is still evidence of inflammation in large vessel vasculitides even after 6 months above 20mg. Hey ho!

Whatever google says we were told last night that while the heatwave has broken in northern Italy, the temperatures reaching the mid-40s further down will continue. Can't find any info - but it was our met office who are usually reliable.

For travelling out and back - you have booked airport assistance haven't you? Makes such a difference.

[SnazzyD in reply to PMRpro]

Ooh, Um no, I hadn't considered myself as a person needing it ☺️; old habits die hard. What is it?

[PMRpro Ambassador in reply to SnazzyD]

I was met at the plane by someone with a wheelchair and we were both taken through immigration via the crew lane, to baggage reclaim and then to the next place we needed to be: checkin for an onward flight or the taxi rank. Sometimes you get transferred on an electric buggy - depends.

Going from home last time I thought I would be fine parking the car in the highrise car park at Munich and walking to the check-in desk - I was exhausted halfway! It isn't a particularly big airport - but by the time we got to check-in I just wanted to sit in a corner and cry! I was SO hot and pulling my hand luggage sized suitcase was too much! From then on we had assistance if I wanted it - it made such a difference, especially for US immigration as you can imagine.

I don't bother for boarding Ryanair - not far enough in those sort of airports

[SnazzyD in reply to PMRpro]

Do you know anything about getting assistance at Rome? Getting off the plane in that heat etc after a long day and early start, doesn't fill me with confidence, come to think about it.

It seems that according to BA, assistance on the ground is the airport's job, but on the website below, it says one has to go to the airline

adr.it/web/aeroporti-di-rom...

the link sends one to another in Italian too. It isn't straightforward and I only hope that for those for whom mobility is a permanent challenge, they get to know the ropes!

[PMRpro Ambassador in reply to SnazzyD]

You book it via the airline - I got my travel agent to do it for me - and it is a good idea to make sure they know at check-in but the airport has a crew of wheelchair pushers or electric buggy drivers. The aircrew usually contact you on board - they often like to get everybody off first so you have no obstacles and the airport assistance is usually waiting at the door as you get out and then they shoot through immigration (if it applies) and take you to baggage reclaim.

[SnazzyD in reply to PMRpro]

Bingo! Handed it over to the tour operator cruise person and she'll sort it out and will get back to me 😃. Would never have thought to ask them, thank you.

[SnazzyD]

Ah ok hadn't thought of that route either. Thank you. Sounds very appealing but it is interesting that I feel guilty and not ill enough for the special attention. Hmm....

[PMRpro Ambassador in reply to SnazzyD]

It's like disabled badges and PIP and stuff - you may have a lot of days you don't need them, but there are times when you do. The trouble with travel is you don't know in advance what day it will be - believe me, I really had thought I could manage the car to check-in and check-in to the bar the other side of security without bothering! It was car to check-in that nearly finished me - and standing answering the US silly questions before check-in! (You know, did you leave your unlocked case in a public place having called someone to add a bomb...?). Once I had sat down and had a rest I was fine for the rest - most of Munich is very close together. However, coming back once the plane docked at right over there in one direction and baggage reclaim was the last carousel in the other. With doors and escalators and bends all over the place in between! Though once you have your luggage you are right next to one taxi rank.