Flying to USA newly diagnosed with GCA/PMR

I have in the last week been diagnosed with GCA following months of terrible headaches,neck, shoulder jaw etc and extreme fatigue, which has now caused loss of peripheral vision in my right eye and deafness in the ear. I have been on 60mg of prednisone for the last three days and already aches and pains have eased. My question is I am supposed to be taking my daughters to New York for a week in 35 days time and am not sure if it is safe to fly with GCA whilst still in the early diagnosis stage, I certainly don't want tomakeanything worse and need medical treatment there! Also has anyone had problems with health insurance?

Thanks :) (ps I am 49) ,


18 Replies

  • Hi Annette,

    I have travel insurance with LV, when you type in GCA under the medical conditions (if you apply on line.) it brings up PMR, and asks no further questions.

    Before I flew to NZ recently I questioned my doctor, and he was quite happy that there would be no health problem with respect to GCA. However, I was down to 6mg a day and two years in when I went.

    I would suggest you discuss with your GP before you take out any insurance just in case he doesn't think it's a good idea.

    I know other people have flown long distance with GCA and/or PMR but not sure how far along with their treatment they were.

    I'm sure you'll get more advice.

    Hope you can go, but you do need to be careful that you don't overdo it, and spoil it for yourself. DL

  • I don't want to be a party-pooper but there is a thread somewhere from someone who was diagnosed with GCA recently, had a biopsy and was told by the doctors they were fine to head off on their holiday to Spain despite being on high dose pred. The pred affected them badly and they spent a lot of time in their hotel. My advice would be to think long and hard about whether you will be able to do what you want to do - first of all, could you do it at home and then could you do it after a longhaul flight?

    If you have already taken out insurance when you booked the trip you should be OK, it was not a pre-existing condition - if you have not yet booked insurance then you may well have problems in finding a company to cover the GCA or anything associated with it for the USA.

  • Hi, it was me. My biopsy came back negative too ☺, which has meant that i am now on quite a relatively quick pred reduction plan to get bback down to a PMR dose, but feel so much better even after 2 days on a 30mg dose instead of the 60mg, so it would seem that a lot of my problems were caused by the pred and not the pmr/gca (if i even have it!) Hindsight is a wonderful thing and I probably shouldnt have gone on holiday but I did enjoy the days i did get out.

  • If you have ongoing travel insurance such as LTSB then you must declare any change in the past 6 months, if in doubt do it as costs could be high if in default. Otherwise take some extra meds with you in case of need would be my advice so have a good trip with a clear conscience!

  • Thank you :)

  • My Consultant would not let me leave the UK till I was six months down the line when first diagnosed and also did not want me to go anywhere, what he called 'remote' in the UK ie too far away from a main hospital. Six months down the line he was happy. Perhaps he was too cautious, but so was I, my sight was precious.

    With loss of peripheral vision in your right eye and deafness in the ear I would be talking to my Consultant before I made any journeys.

    Medical cover for USA can be very expensive.

    I suppose I am a party pooper.

  • No Not a party pooper I'm kind of thinking its not sensible to go but desperately don't want to let my two daughters down as they are not old enough to travel to the U.S. without me, I have a secondary plan of my partner joining us as well now in case of any problems! At the moment I won't be much fun anyway as sleeping sooo much! . Thank you for taking the time to reply

  • I was diagnosed with GCA in February and the doctors allowed me to take a planned trip to Italy in May. His line was that "pills travel" . I was on 50 milligrams of prednisone when i was there. I was going from Los Angeles. My guess is that you will be fine as long as you stay on your dosage.

  • Pills do travel yes - but the basic difference is "Does your medical cover travel". UK medicine isn't private medicine so it has to be bought and like the US pre-existing or recent exacerbations of anything make it more complicated. Within the EU the UK cover travels to some extent with reciprocal agreements to provide what the locals get under state medicine - but here in Italy for example we have copays, not big but they can mount up. Not that anywhere in Europe is as expensive as the US! The difference in cost between travel insurance for Europe and "the rest of the world excluding USA and some eastern countries" and "the rest of the world including everywhere" can be quite mind-bogglingly different as soon as you mention a pre-existing illness however well controlled it might be.

  • Got it......glad I am in the US, loved Italy however , even on 50mg. Hope to return :-)

  • I booked a single trip policy a week before the problems commenced and at the time I declared current medical conditions of high blood pressure, high cholesterol and iron deficiency anaemia, I am not sure if they will say that these are related to the GCA I now have. Thank you so much. For your previous reply :)

  • Providing the doctor provides a statement saying you presented with GCA symptoms at such and such a time I wouldn't have thought it was a problem. You declared in good faith that you had x, y and z - and they are none of them necessarily associated with GCA. Plenty of people have high blood pressure, raised cholesterol and anaemia. I assume they were all of fairly long standing? BP and cholesterol tend to go up when on pred - but you weren't on that at the time were you.

    You could always call them to ask to be absolutely sure.

  • Thank you for your reply, most helpful as I am on similar dose.

  • Hi Annette. I was diagnosed with GCA in Oct 2013 and was due to go to Cyprus 3 weeks later but my consultant advised me not to travel. I was on 60mg of Preds at the time. We had to cancel, but as my husband said my health was more important. So sorry that your trip may need to be cancelled too. I'm sure though that your daughters will understand. They would rather have their Mum fit and well. You only ever have two eyes that can't be replaced (as yet!). I know his you feel as I was truly gutted myself but to be honest I knew in my heart that I wasn't well enough to go. Keep your chin up and hopefully you will be able to go at a later date.ntake care. X

  • Thank you, I am still debating whether to go, I see the specialist next week and will ask them too, although I realise they are bound to err on the side of caution! I do feel entirely gutted at the thought of not going especially as it is my daughters first holiday outside of the UK for 14 years! (they are 19 & 15!) I really appreciate you taking the time to reply :) x

  • In a bit of over kill I had three doctors tell me to go....just not drink too much wine :-). I did not have to deal with the UK insurance I admit. Normally I have jet lag really bad....I think the prednisone really helped in that regard.

  • Thank you so much wonderful people for all your helpful responses, very much appreciated :) x

  • What is GCA/ PMR

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