Flying with flareup of GCA

[DeliaGray]

I have planned a trip to England from the United States to England for several Months now. I am supposed to leave the U.S. on Monday 26th September. Now my right temporal vein has started to protrude and aches. Ihave had an ESR test nd CRP test but both are normal.I have been on a maintenance level of one prednisone for years now and no flareups. My Dr. is pretty sure it is a flareup and wants me to think about not flying and also to raise up to 40 ml of prednisone for a couple of weeks. My last flareup and high does of prednisone made me physchotic until I reduced them and I am very anxious not to be in that place again. I need some advice with such little time to decide. Thank you Delia Gray

[PMRpro Ambassador]

Here where I live, if a doctor had advised I shouldn't travel, the medical cover in the travel insurance I have used previously would be null and void.

[DeliaGray in reply to PMRpro]

Thank you, I am currently arranging to go 6 months from now, and hoping all will be settled down again by then. Delia

[DorsetLady PMRGCAuk volunteer]

Oh dear (or words to that effect) -that’s a right nightmare -but if it is GCA then doctor is correct, not really wise to be flying. Plus if 40mg makes you really unwell then you aren’t going to enjoy your holiday.

I know it’s difficult,,and obviously it’s your decision, but I think you’d be wise to postpone. Will travel insurance kick in and refund costs?

England will still be here for you when you are in a better place -your health comes first…..

[DeliaGray in reply to DorsetLady]

Thanks Dorset lady, making my final cancellations this morning. So disappointing though. Stay well and happy. Delia

[DorsetLady PMRGCAuk volunteer in reply to DeliaGray]

have replied further down …

[MrsNails]

If your Dr has advised against travel - then it would invalidate your insurance.

You can claim on your Travel Insurance now for not going because your Dr has advised you not to go!….,

For me it’d be too risky.

Sorry

MrsN

[DeliaGray in reply to MrsNails]

Thank you so much I have decided against the trip for now. Delia

[MrsNails in reply to DeliaGray]

Probably for the best - disappointing but better to be safe than sorry x

[DeliaGray in reply to MrsNails]

I agree but don't like it one little bit.!! Ha Ha!

[SheffieldJane]

Postpone Delia. At least get the 2 weeks high dose done then see how you and your doctor feel about travel. I am feeling poleaxed currently after my flights from U.K. to Australia, business class. Light eating, only water to drink, 2 stopovers, lots of rest. Flight assistance - every precaution- extra Pred as well. Have still felt extremely stressed and deathly at times. Constant cuddles from my grandchildren bringing me back to the land of the living- gradually. Wouldn’t consider it on 40 mgs. I hope you are fit to fly soon. The seasons are all to pot. It is spring here and cold and wet.

[PMRpro Ambassador in reply to SheffieldJane]

Just watching the cycling from Wollogong - looked damp

[SheffieldJane in reply to PMRpro]

I hope it doesn’t flood, my eldest daughter lives in rural Raleigh and gets cut off. The rain has been monsoon-like. I am staying right on a river where it enters the sea, on a modest slope. I may wake up in the sea.

[PMRpro Ambassador in reply to SheffieldJane]

Houseboat would be handy ...

[HeronNS in reply to SheffieldJane]

I see this was two days ago. All well I hope?

[SheffieldJane in reply to HeronNS]

still here thank you Heron. 💚

[DeliaGray in reply to SheffieldJane]

I am so sorry that you are not able to really enjoy your trip but very glad that you have got to see your grandchildren. After everyone's advice of yesterday I decided to postpone for now. I am so very disappointed and still have to tell my friends in Malta that I will not be there. That is the worst part of it all for me, is disappointing everyone else too. Many do not know of this illness and so are very skeptical about it. I so much appreciate all of you on this site, some times one feels lonely with this strange complaint.! Thank you one and all.

[SheffieldJane in reply to DeliaGray]

I know exactly what you mean. I am currently lying awake worrying about disappointing everyone. I have already declined 2 arranged plans. In spite of my explanations the plans keep coming. I hate plans because you don’t really know how you are going to be on the day and some you know you can’t manage ( monster trucks, camping) !Think how disappointed and worried your friends would be if you became really unwell? There would be something to decline most days. Taking the mature, sensible decision now, will prevent all that. I adore my family, I haven’t seen them since before the pandemic, they are sooo excited.

We are on our own lonely planet but we have each other, on here at least. Well done! He who runs away, lives to fight another day. 🌺

[DeliaGray in reply to SheffieldJane]

Love you, and such practical and empathetic advice. I keep reminding myself that each day many people are diagnosed with the big C word, CANCER. How much more devastating. Las t night I went to a pipe organ recital with a lot of friends so as not to feel sorry for myself. They came back to my place afterwards for time together and whilst they were so sorry to hear that I could not now take my trip, I was questioned as to whether this was for real and how did I really know. One of them looked it up on his phone. It is that kind of stuff which is hard to deal with, but as the Brits are famous for, I " Stay calm and carry on!. " All, on this site help make that possible. Thank you. Delia

[SheffieldJane in reply to DeliaGray]

yup! Been there. One of my daughters is so anti steroids, the only real help we have, not a self indulgence, we all long to be off them.

They mean well, but they are not on our planet and don’t know just how lucky they are. Let us know how you get on. We are all invested in you getting away when it’s safe to do so. 🌷

[DeliaGray in reply to SheffieldJane]

Thanks I will.. it may be a blessing in disguise , I have rebooked for First March, and this may be a preliminary visit to permanently moving back to England. I have been in the U.S .54 years. Stay well, and I hope your health soo nenables you to enjoy your trip too. Delia

[HeronNS in reply to SheffieldJane]

The important thing for you, and eventually your family will understand, is to be with them, and those cuddles with the little ones. Plans and activities are all very well, and so is a bit of sightseeing in new places, but in the end it really is about the people.

[KASHMIRI1]

Don't go. If anything adverse happens to your its always better to be home and in a safe environment. I think as everyone is saying your health insurance could well be invalid.

[DeliaGray in reply to KASHMIRI1]

Thank you so much for caring.

[KASHMIRI1 in reply to DeliaGray]

l hope things work out well for you.

[DeliaGray in reply to KASHMIRI1]

To the best of my ability I will make them do so. Thank you for your envouragement.!!

[Hidden]

Hello Delia, Sorry to hear about the GCA, Your health is the priority here, the effects of GCA can be serious, your doctor is looking after you so now you can oncentrate on getting better. A holiday shouldn’t take priority over this. You will have another holiday, but you can’t always recover damage to your health. Hope you get better soon. On a lighter note, the doctor may decide sooner than you think that your GCA is less of a worry and allow that holiday in due course, but better to listen to him now 😀

[DeliaGray in reply to Hidden]

Thank you so much. Yesterday I decided to cancel this one and still in the process of all the details involved in that, but oh so disappointing after waiting 5 years for this. Delia

[DorsetLady PMRGCAuk volunteer in reply to DeliaGray]

As I said,everything will still be here when you are well enough to come and enjoy it….😊

[PMRpro Ambassador in reply to DeliaGray]

Something I say a lot: "A pleasure deferred is a pleasure gained"

No point going and it all going pear-shaped. xxxxx

[DeliaGray]

Thanks so much. This time I think there are too many chances of something going wrong, so I have decided to postpone until a later date. Delia

[Hidden]

I can understand that it must be terribly disappointing, but how awful it would have been to have health problems on your holiday. I hope that you will be able to really enjoy your holiday in the not too distant future.

[DeliaGray in reply to Hidden]

yes thank you, I think at this time “ discretion is the better part of valour. “! Have a great day. Delia

[Hidden in reply to DeliaGray]

You too. As Sharitone says it would be lovely for you to visit in Spring - or May/June when the roses are out. 😀

[DeliaGray in reply to Hidden]

I agree and now my heart is set towards that. Hard today , as I would have just arrived into the San Francisco airport from Salt Lake City Utah to fly off to London. Ah well, I am alive, can see, and all is well with better days ahead. Thank you so much for the encouragement. Delia

[Hidden in reply to DeliaGray]

You’ll be fine. Best wishes.

[Sharitone]

Sorry for your (temporary) disappointment. We had to cancel our first trip in 3 years this Summer, because of me. But really, I do know that it would have been a terrible struggle, and in the end, it'll be better to wait until we can go with confidence. I'm sure it'll be the same for you, and in any case, England is probably nicer in the Spring!

[DeliaGray]

thank you for your encouragement. Yes this is my 4 th or 5 th postponement over the last 5 years. 2 for GCA and 3 for Covid. What a bummer it all is but it could have been worse. I am so glad we all have each other on this site as this is a lonely disease. People tend to think we are neurotics and I am far from that. Thank you again.

[HeronNS in reply to DeliaGray]

Yes, in the long run you'll look back and think what a good thing you didn't suddenly become ill while on your holiday. Recover at home, and when the time comes you will really be able to enjoy it. P.S. Hope you are feeling better very quickly and your alarming symptoms subside promptly!