First flare - after holiday

[Lclmlbls]

I’ve just arrived back from Dubai. I’ve been reducing to 3.5 for about a month and never had a flare before. However about 3 days before returning home general stiffness returned and today I’m finding it has greatly increased. I recognise similar symptoms to first being diagnosed, particularly difficulty in walking. I’ve had problems sleeping and a few nights had no sleep all (we had night flights too). Should I increase to 5mg for a few days and if symptoms are relieved then return to 3.5 for a few weeks? Any advice would be welcome. Thank you.

[DorsetLady PMRGCAuk volunteer]

See here for usual advice for a flare - and yes back to 3.5mg rather than 3mg.

healthunlocked.com/pmrgcauk...

[SheffieldJane]

You are thinking along the right lines. You have subjected your body to a lot of changes on many fronts. I would follow the sick day rules as outlined in FAQs accessed on this page. Double your dose for a week to 10 days and maybe return to 4 mgs. and carry on from there for a while before you resume tapering. You must have been vulnerable to experience your first significant flare.

[Lclmlbls in reply to SheffieldJane]

Thank you. I was hoping to get away with 5mg but the way I’m feeling now , maybe that won’t be enough. It’s a combination of causes I think - a certain amount of stress, completely different diet, lack of sleep and an unfamiliar bed. Even though it might not sound like it I’m so glad I went but I should have prepared better and upped the dose for the duration of the holiday. I didn’t realise how departing from the daily routine could have such a negative effect. We live and learn!

[sidra1968 in reply to Lclmlbls]

Just running an estate sale and sitting in a different chair for 2 days has made my glutes have some PMR pain (never had it there before)..it seems crazy, but it is true. Don't think my family believes me. An odd illness, for sure.

[PMRpro Ambassador]

Worth a try - but not sure just going to 5mg will be enough, we suggest ADDING 5mg to the dose where the flare occurred. However - probably worth trying the 5mg first because if it IS enough, you've saved on the pred.

[Lclmlbls in reply to PMRpro]

Thank you for your reply. I will give 5mg a go in the first instance. Shall I go with it for 4-5 days? If it settles can I go back to 3.5 and give that a go for how long? - a month maybe. It’s disappointing as it was all going so well!

[PMRpro Ambassador in reply to Lclmlbls]

It isn't the end of the world - the flare approach means you don't lose much time. But never forget, you aren't heading relentlessly for zero, you are looking for the lowest effective dose, the lowest dose that gives the same symptoms control as the starting dose did. Maybe 3,5 IS that dose - if it was enough then it can take a few weeks for the left over inflammation at the next dose down to build up enough to be noticed. Or 3 may have been just enough for normal living but not when you added in travel and all the excitement of a holiday - it is still stress, even if it was nice stress.

[Potemkin]

No advice on what to do but recently I was going on holiday and had asked for a prescription script to travel with. The Dr called and as I'd dropped my dose but wasn't managing that well suggested I go back up and enjoy my holiday. He talked of quality of life. He made me realise that there are times that it wasn't sensible to reduce because it would impact my enjoyment of life. I have struggled with thinking about how long I'll be on pred but having that conversation really helped. We do need to enjoy our lives and if that means upping the dose sometimes then so be it. We will get to our lowest dose eventually. Try not to be too disappointed

I hope your flare subsides soon.

[Lclmlbls in reply to Potemkin]

Thank you for replying. I hadn’t thought to increase my dose before my holiday but wish I had done that now. I guess I just have my eye on reducing as soon as possible, which clearly shouldn’t be my main focus. As you say, quality of life is key.

[Birder21 in reply to Lclmlbls]

Thank you for the post which has made me think! I am just reducing to 7.5mg on DLs 5 week taper (3 weeks in) but we go to South Africa in 5 weeks time for 3 weeks and will be doing more walking each day and quite a lot of car travel, now wondering if I should continue with this taper or actually go up a bit for the time we are away...

[DorsetLady PMRGCAuk volunteer in reply to Birder21]

We always suggest you don’t reduce just before a holiday, nor whilst on it..in fact this is in my post -

‘I usually found once I completed week 5, I was able to go straight into the next taper. But you can always stay an extra week or so, it's entirely up to you.

On a few occasions I stayed a bit longer - if I was not 100% sure my GCA was settled or if I knew something a bit stressful was on the horizon (holidays, Christmas, visitors, etc).’

As you are in week 3 of 5 and then have another couple of weeks before you depart - you should be okay. But no more tapering until a couple of weeks after return.

[Birder21 in reply to DorsetLady]

thank you

[Lclmlbls in reply to Birder21]

This is such a brilliant website. We are so lucky to have support and advice from such knowledgable caring individuals. Sharing our questions and answers is so helpful for everyone. I’m very grateful to be part of this network. Thank you.

[PMRpro Ambassador in reply to Potemkin]

Now HE sounds like a keeper!

[pmrdec112014 in reply to Potemkin]

Well! That's very rare for the doctor to talk about quality of life as normally most seem to be on a relentless path to get you to zero.Your doctor is a keeper!!!!!!

[Doraflora in reply to Potemkin]

Hi Potemkin.

Your post has really made me think about my own situation. I’m currently on 2.5 mg (have stayed on this dose for about 3 months now). I’ve not tried to taper any more as I’m waiting to see a consultant next week to discuss my recent scan and my bursitis & baker’s cyst diagnosis.

This isn’t bothering me, but it’s just that we’re going to Singapore & Australia in 6 weeks time, visiting our daughter, so I’m deliberating increasing my dose as there’ll be a lot of travel stress, plus I’m worrying a lot about my husband and his degenerative spine condition.

I want to come back from our travels not a jibbering wreck 🤣

[PMRpro Ambassador in reply to Doraflora]

You have booked airport assistance for both of you haven't you?

[Doraflora in reply to PMRpro]

Well no. I can walk easily and hubby is fairly alright, as long as he can stop when he needs a break. Singapore is massive, so many gates, but thankfully there’s shuttle buggies if you need them.

[PMRpro Ambassador in reply to Doraflora]

Book it - honestly, you may think you are OK, but that "can I stop if I need a break" goes to pot if you are late and have to rush or security is bedlam and you are being hassled. And with assistance, even just for one. both of you get to jump the queues and taken to areas with seating when everywhere else is heaving. It saves you worrying and you will arrive there feeling human - which is a great start!!

[Doraflora in reply to PMRpro]

He’s looking horrified as I’m reading your comment out. So bloody independent he is (not a bad thing - ex RN). He doesn’t need a wheelchair but I am definitely going to ask for what other assistance we can get. Thanks for the tip.

[PMRpro Ambassador in reply to Doraflora]

The advantage of a wheelchair is you ALWAYS have a seat, I don't NEED a wheelchair but sometimes that is what you get as they fit in small lifts, the electric buggies don't and sometimes they have to change levels. It is to make life easier for the staff too.

He can look horrified - leave him to deal with HIS suitcase then ...

[Potemkin]

I have no medical expertise but if you are managing at that dose maybe just see how you go. If you've been on it for 3 months you must be quite stable. Maybe ask the question in the forum or there may be a FAQ on travel.

I wasn't doing so well which is why I went back up for my holiday. I'm about to attempt the next taper which will take me back to the dose I wavered on. 🤞

[DorsetLady PMRGCAuk volunteer in reply to Potemkin]

There is- have linked and tagged Doraflora

healthunlocked.com/pmrgcauk...

[Doraflora in reply to DorsetLady]

Thank you Dorset Lady. You and PMRpro are just amazing with your knowledge and support😘

The thing that’s bothering me most about the journey is handling the luggage at Manchester Piccadilly train station for the change of train to the airport. Hubby isn’t fit enough to swing cases about anymore and I’m not strong enough, being a little weakling🤣. I’m going to contact the train company now and request assistance.

The same when we’re waiting for the luggage in airport arrivals. I’ll have to ask for help hauling them off the belt.

[DorsetLady PMRGCAuk volunteer in reply to Doraflora]

When I’ve flown, whoever is assisting you will get the luggage off the belt for you..

Likewise with the train station.

.. and I agree with PMRpro…

[PMRpro Ambassador in reply to Doraflora]

If you book airport assistance they do that for you. There are lots of little things that all add up to making it worth it! In some airports they take you to your next stop - your car in the carpark, the station, whatever,

[DorsetLady PMRGCAuk volunteer in reply to Doraflora]

PS - you’ll need it at Singapore - and it might be a wheelchair or a buggy.. Normally the UK flights arrive at one terminal and if Australian flights are same as NZ they depart from a different one. I’m going shortly and have booked SA - no longer have GCA, but a dodgy back and cannot do the long schlep! .

[Doraflora in reply to DorsetLady]

Oh that’s really helpful, both of you, thanks.

it makes sense to do that now.

It’d be a long haul (no pun intended) traipsing around Singapore airport otherwise. I’ll definitely book whatever I can now. Hubby’s pride or not…..

Happy and safe travels, DL. ✈️

[DorsetLady PMRGCAuk volunteer in reply to Doraflora]

There is a monorail between terminals 1,2 & 3 … safe travels to you as well.

[PMRpro Ambassador in reply to Doraflora]

I can't remember SIngapore airport - I was much younger and fit there anyway - but Seoul airport is tiny and I was told I didn't need assistance. Theoretically I didn't, it was about 50m from check-in to the security queue and once through you were at the shops and gates. But the Priority queue was crazy and I stood for well over half an hour amidst screaming brats. Then when we left the wine bar with seats to go to the gate also barely 50m away, there were no seats, screaming brats and a wait for boarding. Because I had assistance booked and a card to prove it, we were taken to a separate area with seating and able to board first. The boarding bit alone is worth it!!!

I flew to the UK last November - without assistance Frankfurt would have been a nightmare going finding my way around. But coming back would have been 10 times worse. The plane was late arriving at Manchester to turn round so waited ages there - in an allocated waiting area having been escorted through manic security. Someone else kept an eye on the delays, kept me informed, took me to the right (changed) gate and saw me safely on board ahead of the melee. At Frankfurt my connection was taking off as we landed so someone else found out where to go to get my ticket changed. The less said about that bit of the experience the better but that wasn't airport assistance, that was a bad tempered member of airport staff, and once I had my ticket I was escorted to the gate I would need to be at a couple of hours later, via a cafe to get something to eat. There the gate was changed again - but someone came to find me to take me to the bus to the place - out in the middle of the terminal!! At Innsbruck I was greeted by a paramedic with a wheelchair, straight through to the machine to pay for my parking and then actually to the car in the carpark! Innsbruck is the smallest airport I have ever been through - except maybe Barbados!!! But it was welcome after the day I had had.

[Doraflora in reply to PMRpro]

Oh my goodness! What an horrendous experience you had, especially with screaming brats thrown into the mix.

We experienced Frankfurt airport during a Rhine cruise last year. Passport control was absolutely bedlam, I do remember that.

Manchester airport is worse than any we’ve ever been to, so I’m hoping that going for mobility assistance will ease the hell of their crazy security.

Now Singapore is ginormous, it’s like a small town, but check-in/out has usually been a dream in the past (last time we were there was just before the pandemic).

You’d think with all the stresses of airports it would put us all off flying, wouldn’t you? Oh, to get upgraded one day. Dream on, Heather😏

[PMRpro Ambassador in reply to Doraflora]

My return trip to the UK last November was the first and last flying!! I had done a single trip from London Gatwick to Innsbruck years ago which was OK though it had been a complicated one: car to Darlington, bus Darlington to London (because it cost £1, £30 from Durham, same bus!), bus to Gatwick, train from Innsbruck to home. Took me 3 days in bed to recover. I drove with my campervan this summer - brilliant, other than the ferry price Dover to Dunkerque. Always a bed and loo available, stop when you've had enough for now, fridge and food and drink. Luckily I love driving.