Cruising! : I was only diagnosed with PMR last week... - PMRGCAuk

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Cruising!

Decsgran profile image
27 Replies

I was only diagnosed with PMR last week, so still finding out a lot about it. We are booked to go on a cruise in September. Whether or not it will go ahead is another matter, but if it does, is it ok to travel? I am concerned about GCA and what would happen if it struck while on board, but don’t think I can put my life totally on hold just in case something happens. We’ve been looking forward to cruising again for the last twelve months. I don’t think my husband fully understand what PMR is and what effects it has, even though I’ve given him stuff to read. He had viral encephalitis 5 years ago and his memory and understanding are not as good as they used to be.

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Decsgran profile image
Decsgran
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27 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

MrsNails is the the lady for advice on cruises - she’s done plenty with PMR.

As for GCA arising, just do your homework beforehand so you can explain to medical team on board.

Make sure insurance policy includes PMR.

I think the biggest issue is whether cruises will be going ahead by September - but if it does, enjoy

MrsNails profile image
MrsNails

As DorsetLady says I’ve Cruised with PMR - the first time after diagnosis we flew to Singapore then sailed to Australia & on to New Zealand, we were away for over 5weeks.It was a year after l first developed symptoms & nine months after l was diagnosed.

My Consultant gave me the go ahead with a fair amount of backing but was insistent l carried way more Prednisolone than l needed, he also gave me a letter of explanation & told me what dose to take if l had any suspicions that l may be developing GCA; fortunately for me GCA has not been an issue.....

With regards to Cruises this year, it is still very much an unknown situation. From what l’m hearing from the Cruise Lines l sail with, there are plans for UK Cruises for UK Passengers some maybe even be ‘Sail Only’ with no Ports of Call. Where is your Cruise scheduled to sail from & its itinerary? I personally remain very undecided about the risks as l have been Shielded throughout the last year.

But basically yes we can still take holidays & cruises but always carry sufficient medication.

MrsN

Decsgran profile image
Decsgran in reply to MrsNails

Due to sail to Baltic from Dover in September with Saga, then to Canaries for Christmas from Southampton with Fred Olsen. We’ve sailed with Fred before but not Saga. We were due to do an inaugural cruise last August but as it obviously wasn’t going to happen I transferred to a similar itinerary this September. My feeling is that it won’t go ahead as they’re currently having to reschedule all of this year’s cruises.

MrsNails profile image
MrsNails in reply to Decsgran

I’m following the Info on Gov.UK - there’s been no recent updates. I wonder what Saga will do thinking of their demographic? I think we will just have to follow carefully, we’ve had three Cruises cancelled, one’s been rescheduled to next year (2nd reschedule) then one in September to the Canaries which is another reschedule from May last year & another one totally cancelled....

Fingers Crossed 🤞🏻 for some kind of return to normal eventually!

MrsNails profile image
MrsNails in reply to Decsgran

I’m following the Info on Gov.UK - there’s been no recent updates. I wonder what Saga will do thinking of their demographic? I think we will just have to follow carefully, we’ve had three Cruises cancelled, one’s been rescheduled to next year (2nd reschedule) then one in September to the Canaries which is another reschedule from May last year & another one totally cancelled....

Fingers Crossed 🤞🏻 for some kind of return to normal eventually!

MrsNails profile image
MrsNails in reply to Decsgran

I’m following the Info on Gov.UK - there’s been no recent updates. I wonder what Saga will do thinking of their demographic? I think we will just have to follow carefully, we’ve had three Cruises cancelled, one’s been rescheduled to next year (2nd reschedule) then one in September to the Canaries which is another reschedule from May last year & another one totally cancelled....

Fingers Crossed 🤞🏻 for some kind of return to normal eventually!

Decsgran profile image
Decsgran in reply to MrsNails

As I understand it they can sail round uk from May 17 but can only stop at English ports!

MrsNails profile image
MrsNails in reply to Decsgran

Cunard have cancelled everything until September but will be releasing UK only Cruises on the Queen Elizabeth once the Government give the OK....

in reply to Decsgran

Scotland too? We've never been!

SnazzyD profile image
SnazzyD

I’d go on a cruise any time if uncertain and having other medical risks I have peace of mind. I went on one 5 months in with GCA and 18mg of Pred. On a previous cruise I did a tour of their medical facility as a fellow professional and I was mightily impressed.

SheffieldJane profile image
SheffieldJane

I think you could go, and look after yourself on board ship just as well as at home. Make sure that you have an emergency dose of Pred, maybe enough for high dose each day ( 60 mgs) for a week. Just in case. Otherwise, it would be a lovely relaxing thing to do.

PMRpro profile image
PMRproAmbassador

I've travelled all over the world since having PMR, mostly flying or driving - China, S Korea, Japan, Australia, Canada, USA, places on the way to each and much of Europe. As long as you have good medical insurance, which doesn't usually cost more because of PMR, there isn't really a problem. I wouldn't travel soon after a diagnosis of GCA but that is rare, though it does happen, so the risk is relatively small.

Always carrying a supply of pred "just in case" is a good policy - so there is a buffer period to get further supplies if you did need it.

johnmaryburns1 profile image
johnmaryburns1 in reply to PMRpro

Can you advise which travel insurance company you use please? I usually travel 4-5 months over our winter to Asia and Far East? Thanks

PMRpro profile image
PMRproAmbassador in reply to johnmaryburns1

Won't help you - I don't live in the UK. ne I used to use is restricted to residents of Austria and the Italian region where I live and the current one is for just this region, held through the Weisses Kreuz, an organisation supplying health and rescue services.

Pixix profile image
Pixix in reply to johnmaryburns1

We continue to travel, though covid has stopped us, so only managed the USA (have only had PMR 15 months). However I have a lot of other medical issues & found Staysure were the company willing to insure me! We have an annual travel insurance policy as we usually fly about five times a year. The other good one is called insurancewith though once I was diagnosed with yet another problem, they declined to continue my policy after 2 years! Good luck.

123mossie profile image
123mossie

Hopefully you will have had two vaccines by then, I’d want to feel safe on board.

Decsgran profile image
Decsgran in reply to 123mossie

Saga are insisting on passengers being fully vaccinated at least 14 days before

Daffodilia profile image
Daffodilia

Cruising will probably offer the most support if you are poorly on holiday - Saga charged about £1.50 on my policy for PMR

When I was diagnosed with PMR a few years back my wife and I booked a cruise around the Caribbean. I made sure I had my private insurance all up to date and in order and went on a superb holiday! Make sure you have your pills in order (in weekly containers) and then add another week or two in a separate container. I also brought a box of Co-codamol if the pain was bad.

We had the most wonderful of holidays and one day I was a bit achy so at the next port I stayed on board soaking up the beautiful weather.

The first thing we will do in the future (if we can) is go on a 14 day cruise of the Caribbean - Magic

Pst. We also took cruises out of Southampton and they were awful. Two days of the Bay of Biscay is enough.

PMRpro profile image
PMRproAmbassador in reply to

Haha - I'm told half a day of the Bay of Biscay can be more than enough!!!

Honestly it is the most terrible thing!

herdysheep profile image
herdysheep in reply to

Not known as Bay of Sickbay for nothing but tripping round north of Scotland and down North Sea can leave a bit to be desired.

PMRpro profile image
PMRproAmbassador in reply to herdysheep

I crossed Rotters to Hull in a Force 10 once. I was in a cabin at the pointy end - alternated between my head hitting the cabin wall and landing with my feet against the wall to the loo. I went out for a walk - I have never been on a ship with so few people to be seen at midnight!! Only Security to be seen and he was bored stiff ...

S4ndy profile image
S4ndy

My understanding from a friend of mine with MS is that cruising is a good thing with a chronic condition. She gets all the help she needs. Because cruise ships have been "hotbeds" of infection with covid and other virulant illnesses like norovirus it is very likely that extra precautions will be taken with infection control.

I have heard that the cruise lines are asking for medical information to be given and are refusing travel to people with health problems. Don't know if this is the case as this is secondhand information.

MrsNails profile image
MrsNails in reply to S4ndy

Hi Sandy

Yes, there are certain conditions that Cruise Ships will no longer allow you to sail with & if necessary you have to have a letter from your Doctor confirming you are fit to sail......

MrsN

Avadip12 profile image
Avadip12

I added PMR to my insurance and only got a £10 increase Ona yearly world wide insurance by flexi cover

Harrywogan profile image
Harrywogan in reply to Avadip12

Avadip12 so did I but never went up,only time it went up was when I had GCA but after a year came back off.x

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