Travel: We are due to fly to the UK on Tuesday 19th... - PMRGCAuk

PMRGCAuk

14,991 members27,372 posts

Travel

Mahler2 profile image

We are due to fly to the UK on Tuesday 19th of this month. I am a little worried about my immunity at the moment. I saw the rheumatologist 2 days a go and my inflammation marker was 86. I have been on 4& 1/2 mgs of pred for about 6 weeks and feel ok-ish. A little more tired than usual and aches and pains in the morning until I have had the pred and walked the dog for an hour.

Does anyone in this wonderful forum have any advice about whether it will be ok to travel; a 2 hour flight only.

69 Replies
PMRpro profile image
PMRproAmbassador

Why are you worried about your immunity? I'd be more worried about the PMR with (I assume) an ESR of 86. Has it been lower? How low?

Mahler2 profile image
Mahler2 in reply to PMRpro

My last reading was in May and it was 8. Since then I stopped injecting Tocilizumab because of persistent UTI and presumably this is why it is now 86

PMRpro profile image
PMRproAmbassador in reply to Mahler2

The ESR was low on tocilizumab because of the way it works - it stops the production of IL-6 which is the inflammatory substance that causes the symptoms - but that doesn't mean the underlying illness that cause the symptoms we call PMR. Judging by the marker now, it is obvious your PMR is still active - and you would need more pred to manage it,

Is your doctor for PMR in Spain going to do anything about it? If the 4.5mg isn't enough to get the inflammation down it will just keep getting worse.

Mahler2 profile image
Mahler2 in reply to PMRpro

Thank you so much for your quick and informative reply. I have never seen a GP about my PMR, only the rheumatologist. She is excellent and usually gives me very detailed instructions about how much and how often to reduce. She was disappointed I had stopped the Tocilizumab in May. When I saw her 2 days ago I agreed to go back on it but I won’t get it from the hospital pharmacy until I come back here at the beginning of November. She didn’t say anything about upping the pred until then and I am hesitating to do so as I understand it is the steroid which compromises the immunity. ??

PMRpro profile image
PMRproAmbassador in reply to Mahler2

So does tocilizumab - that is why you were developing UTIs. What is most important really is what dose of pred you were on when you got your Covid vaccines. And do remember that the UK is very different from most European countries in the context of Covid - no masks in England at least:

"What are the current rules about masks across the UK?

In England, the legal requirement to wear a face covering ended on 19 July, apart from in healthcare settings and care homes, unless exempt

In Scotland, masks must still be worn in shops and on public transport - as well as pubs and restaurants when not seated; they are required in indoor public spaces in universities and - until at least the October holidays - in secondary schools

In Wales, masks are still legally required on public transport and in all public indoor areas apart from pubs and restaurants

In Northern Ireland face coverings are no longer compulsory in places of worship, or for students in school classrooms; they must still be worn on public transport and in shops and hospitality venues"

And the daily infection figures are running in the region of 40,000 and seem to be rising.

SheffieldJane profile image
SheffieldJane in reply to PMRpro

In England, ( well my corner of it) not that I go out much, mask wearing in shops ( there are signs) and restaurants until you are seated, seems to be being observed by the majority of folk, on a voluntary basis. Even the young and cool either wear pretty ones or black ones. Also queues outside little shops for a staggered entry.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

That's a relief

Here in Mallorca everyone is still wearing masks in shops, offices etc, even a lot still in the streets. You will be challenged if you enter a shop without one.

PMRpro profile image
PMRproAmbassador in reply to Mahler2

Same here in Italy - and long may it continue!!!

Here in Cornwall we are following the same guidelines as you . again numbers rising BUT death numbers are lowering .

PMRpro profile image
PMRproAmbassador in reply to seamaid

That shouldn't be the only consideration though. It is reckoned that about half of patients who get Covid go on to develop Long Covid and that is going to be a major economic burden too.

Mahler2 profile image
Mahler2 in reply to PMRpro

Thank you so much for all that information. I listen to the Today programme every day but it’s fantastic to have it all in one place to refer to. Thanks. Do you mean I should go up to the dose I was on when I had the vaccines? I’ve just had 2. No booster here yet although it’s coming.

PMRpro profile image
PMRproAmbassador in reply to Mahler2

Not quite - though I think you might be better upping the pred some though, to a level that manages the symptoms properly. One of the warnings rheumatologists have issued is that symptoms should be well managed with poorer outcomes in patients who are not well managed should they contract Covid.

Mahler2 profile image
Mahler2 in reply to PMRpro

Thanks again. Will do! Who needs a GP when we have the wonderful people on this forum to ask advice from?

Regarding masks I would now say those of us wearing them are in the minority!

I find it’s very variable from shop to shop etc. Certainly you can’t rely on people wearing masks - I tend to avoid most crowded or cramped indoor spaces x

Seacat30 profile image
Seacat30 in reply to Koalajane

Some small independent shops and coffee bars still restrict numbers and ask for masks here in Brighton. They are the minority. Most people have given them up. Taxi drivers don't all have them on now either.

Kendrew profile image
Kendrew in reply to Koalajane

Worryingly, I have to agree with you. I live in Essex in UK and less and less people are bothering to wear masks. Unfortunately, the experts tell us that wearing a mask doesn't protect you particularly well unless it's a hospital grade mask, but it will help protect others from catching covid off you if you have it!!..... so thankyou to all those who don't give a jot about others health and well-being!! (Obviously I'm not including people who have legitimate reasons for not wearing one!) Worryingly times.

PMRpro profile image
PMRproAmbassador in reply to Kendrew

Suppose it depends how they look at it doesn't it? Both levels stop some virus, every little helps. And that is why the numbers are a lot better in mainland Europe. Except Austria where the numbers are rising - and no-one is to be seen wearing masks in Innsbruck city centre and shops according to my neighbour who was there last week ...

Kendrew profile image
Kendrew in reply to PMRpro

I definitely feel if I'm wearing a mask that I must surely have more protection from breathing in the virus particles than without, simply because there is some kind of barrier between my nose and mouth and the atmosphere I'm breathing....so I for one will definitely continue to wear one.

PMRpro profile image
PMRproAmbassador in reply to Kendrew

Here it is predominantly FFP2 masks still - lots of people don't like them but i find them more comfortable. Mine are VERY pink ...

Kendrew profile image
Kendrew in reply to PMRpro

They're definitely available here but not as easy to access as the regular ordinary blue ones...not round where I live anyway.

PMRpro profile image
PMRproAmbassador in reply to Kendrew

Every supermarket sells them and of course the pharmacies as well.

Kendrew profile image
Kendrew in reply to PMRpro

Perhaps someone could give our local pharmacy a kick up the backside!😄

I got a pack of FFP2’s for use in case I have to use public transport etc, from our friends at A.co.uk 🤷‍♀️

👍👍

AshPen9 profile image
AshPen9 in reply to Kendrew

Boots have FFP2s

Kendrew profile image
Kendrew in reply to AshPen9

My village pharmacy is a Boots! For some reason they're out of stock and can't order any but thankyou anyway. I appreciate your help.

AshPen9 profile image
AshPen9 in reply to Kendrew

I got mine from Boots online. I think if you spend £25 the p&p is free. I stocked up on one or two other things to take it over that. They came quite quickly.

Kendrew profile image
Kendrew in reply to AshPen9

Thankyou.

123-go profile image
123-go in reply to PMRpro

Natch! 💕

Mahler2 profile image
Mahler2 in reply to Koalajane

I will certainly be joining you in the minority when in the UK.

I think you will manage a 2 hour flight and the attendant hassles with flying. I would consider 5 mgs extra Pred to cover me for the travelling and promise myself a good sleep when I get there - warn your hosts. We managed my trip to Ireland this way ( by boat and car though) and it was magical with planning. You can return to your normal dose after a few days without tapering. If you are sure that you aren’t flaring. You could even consider airport assistance - it looks enviable.I am also having a Tocilizumab holiday for antibiotics, a UTI and gum abscess. My shoulders are beginning to twinge. Neither of the above conditions is improving. It’s a mad balancing act. Tocilizumab definitely has a more profound effect on my resistance to infection than Pred ever did. I face a root canal procedure when the abscess clears up and worry about the infection spreading in the meantime. Sorry - off on a tangent.

I hope you have a lovely time!

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

"You could even consider airport assistance - it looks enviable" - it is!!! No standing in queues and if you do you have a seat!

Nextoneplease profile image
Nextoneplease in reply to PMRpro

I had airport assistance to get me through Heathrow on way way to Toronto just before the pandemic hit. It was a blessed relief and in no way embarrassing etc. In fact the staff seemed genuinely pleased to help 😊

PMRpro profile image
PMRproAmbassador in reply to Nextoneplease

Haven't tried H'row - Munich is great! But Lesson No 1: don't believe ANYONE who tells you it is REALLY only a short distance. It really WAS only about 50m in Seoul and I was sent through the priority lane. But the priority lane seemed to be for the world and their children, it was longer than the other one! But I did play the card at the gate where there was nowhere left to sit - and we were taken through to another area where there were about 10 of us altogether. :)

Nextoneplease profile image
Nextoneplease in reply to PMRpro

I find Heathrow is huge - really challenging to my stamina - and there’s the stress of getting to the right place at the right time of course…..

Mahler2 profile image
Mahler2 in reply to PMRpro

My husband had airport assistance after both his 1/2 knee replacements. It was fantastic.

Thank you Sheffield Jane. I will take your advice about upping the Pred. My husband will be delighted. He has been trying to get me to do it for some time. It’s just that when you get down to a relatively low dose you are reluctant to go up again, and will put up with some moderate pain and discomfort to stay low. I hope your forthcoming procedures go well. Thanks again .

I know, been there but feeling rotten every day is no way to live. If the moderate pain was a static state then yes maybe but it gets worse as unchecked inflammation builds. Watch out for little bursts of irritability if you increase - another holiday saboteur.

I'm English but no way would I visit Britain with those very high infection rates. Yours and the general public.

That’s sad to hear, Constance 😞 I think it’s the vaccine effect - a lot of people have become rather fatalistic about catching Covid, now that serious illness and hospitalisation rates are much lower than they were x

PMRpro profile image
PMRproAmbassador in reply to Nextoneplease

Still 900 or so per day being admitted, and nearly 800 on a ventilator. But the numbers are being whispered - and it is thought more than half of cases develop Long Covid even after mild infection. At over 40K a day, that is a lot of people.

Nextoneplease profile image
Nextoneplease in reply to PMRpro

I’m certainly not intending to minimise the situation PMRpro. It’s not good, that’s for sure…..in fact if anything 2021 seems worse than 2020. And yet, there is a fatalism in the population as a whole, which is puzzling and concerning. The numbers go up steadily and yet we (or at least I) notice no change in behaviour. It’s as though we’re browbeaten by everything (COVID, Brexit, climate change, the economy, jobs, crime…..you name it) and lots of people have lost purpose and energy. I hope I’m wrong!

PMRpro profile image
PMRproAmbassador in reply to Nextoneplease

There was a very good article in the Guardian in the last few days about that - they said it has been normalised so people aren't shocked at the deaths Italy by contrast has under 3000 cases a day and very low death numbers.

Nextoneplease profile image
Nextoneplease in reply to PMRpro

Yes, normalised puts it very well - sadly x

Constance13 profile image
Constance13 in reply to PMRpro

I notice that with SIL and DIL when we see them on skype. They don't seem to think 40000 PER DAY ???) is anything to worry about. OH and I just shake our heads. It just ISN'T acceptable!

PMRpro profile image
PMRproAmbassador in reply to Constance13

Forty thousand! Those are the sort of figures from last year aren't they? I think it is the herd immunity aim without the label.

Nextoneplease profile image
Nextoneplease in reply to PMRpro

It was around 80,000 per day in the January 2021 peak, I think 😳

But yes, herd immunity without the label…..

PMRpro profile image
PMRproAmbassador in reply to Nextoneplease

theguardian.com/world/2021/...

theguardian.com/world/2021/...

show the 2 sides - and I echo the chap in Italy ...

Nextoneplease profile image
Nextoneplease in reply to PMRpro

Yes 😊 I liked his conclusion:

“It’s a real contradiction because we have more restrictions, but I feel so much freer here.”

😟

Constance13 profile image
Constance13 in reply to PMRpro

Exactly - "herd immunity" the toffs say - but why isn't it happening?

When are they going to realise they have made a big, big mistake?

Mahler2 profile image
Mahler2 in reply to Constance13

It is a little daunting, but we have so many things to do that were planned for April 2020 and that we really can’t put off any longer. Thanks for your advice though.

Have a brilliant time Mahler2 - it’s not so bad over here really 😊x

Thank you. I can’t wait to see friends and family we haven’t seen in real life for nearly 2 years.

Oh, that sounds wonderful 😊 There comes a moment when we can’t wait any longer, I think….enjoy it all x

Thanks again.

My daughter her husband and two grandchildren are finally coming from Australia for Christmas! They’ve just been allowed. 2 year separation! In my excitement I booked a pantomime for us all. Oh! god! “ It’s behind you”! 😷

Oh SheffieldJane that’s amazing news!! 🥳🥳

I’d be beside myself with joy, as I am sure you are! Have a fabulous time, enjoy 👏👏xx

I felt quite ill when she told me - no adrenaline to meet the news aargh!

Oh but you’ve now got a good few weeks (couple of months?) to plan menus, outings, gifts……and hugs 🤗 There’ll be hugs!! Yay 😀xx

The part of me that copes is doing all of that, the other part is a quivering wreck. My little Theo aged 7 just played silent night on the piano perfectly and said he can’t wait to see us ( on video). 😭

Aw, you’ll have me at it soon….😭xx

I have a daughter, son in law and grandson aged two who only live approx 3-4 hours away in London and I miss them enough!! Honestly I feel so much for long distance families.

I can only repeat, have a great time 😀xx

Number 2 daughter has just messaged to say - don’t buy them too much mum. I already have. 😱

York54 profile image
York54 in reply to SheffieldJane

Wow, how wonderful, great to have that to look forward to xx

Well it seems that we are going down with the ship captained by a clown. 👨‍✈️

Pixix profile image
Pixix in reply to Constance13

I agree! UK has the highest new daily cases in the whole world every day, now up to 40,000 new cases a day, & often 100+ sadly dying. I wouldn’t visit here if I had a choice! Most other major euro countries are consistently around the 5,000 mark. But no real mention in the media. Worldometer has the stats, and gov.uk. We hear few people wear masks now, we don’t go in shops, but they aren’t doing anything wrong! We are opening up to new countries to visit with less stringent conditions so that number could surely rise! Hospitals in Wales area starting to utilise the army to help their ambulance service. But it’s all being kept very quiet, I feel!! Perhaps others will notice this soon?!

Constance13 profile image
Constance13 in reply to Pixix

Yes, they are keeping quiet - which is downright dangerous - "they" (ie the government) are actually responsible for the massive increase in cases (therefore the awful illness or even deaths).

They won't believe they made a massive mistake saying "freedom day". Heaven help the people in UK!🤷‍♀️🤨

Pixix profile image
Pixix in reply to Constance13

I quite agree! I think that doing a report on ‘how the govt handled the pandemic’ shows they think it’s all over, ‘handled’ is past tense. Now they think it’s just like the ‘flu & loads of people die of that each year. As for the vulnerable...well, given them advice, but their choice & if they don’t take it, but then get it...their fault!! It’s hard for ‘normal’ people to realise that when they were ‘set free’ from that day it made vulnerable much more vulnerable, & really almost need to shield more now to be safe than when ‘told to shield’! Just my thoughts & ‘take’ on it, you understand. I just feel dreadful for those 100+ dying each day, their loved ones, friends & family...heard of somebody losing their young niece last week...no medical troubles at all, young, fit & healthy. Atm, I think I’d move to Italy or Germany to be safer, or very rural parts of the USA, like Vermont! But then they are all opening up, so visitors will still sneak it in...!! S x

You may also like...