Long haul flight

[Janann25]

First, a bit of background info. Back in March of this year, I was invited by lovely friends to stay with them for a holiday in Florida. Having lost my husband last year - and never having been to America - I was so excited. But then, in May this year I was diagnosed with PMR and a month later with possible GCA. So, as I'm sure you'll all know, the treatment for GCA is started anyway. My starting dose was 40mg and, during August I was able to reduce without problem to 30mg. The next reduction was to 25mg during September - my own doctor is happy to prescribe the 1mg tablets as well as 5mg so I can reduce at my own pace - but after 4 days at 29mg, I had some head pain. I contacted my rheumatologist and she advised going back to 35mg for 4 weeks and then try reducing again. So, my concern now is whether or not I should go on holiday - I'm due to fly on 22 October (being treated to Business Class!! 😊) I intend contacting my rheumatologist next week to get her advice - well actually, I don't speak with her, there are two very good support nurses who are very helpful and phone me back with the answers - but I would really appreciate hearing from anyone who has made a long haul flight whilst taking 30mg Pred.

Sorry for the long, rambling post!!!

Jan

[PMRpro Ambassador]

Before you make any decision you need to know 1) what does your insurance say and 2) what does the rheumy say. Anything we say is besides the point. You must not travel without adequate medical insurance, especially to the USA (and several other countries but that doesn't apply here). Insurance companies can be wildly variable - but you don't want to need cover and them turn round and say "Ah but you shouldn't have travelled, therefore we won't pay for the claim". They will try to wriggle out of paying claims, even when the cause had nothing to do with the GCA or whatever.

While you are away, and for a few weeks before DON'T REDUCE!!!

[DorsetLady PMRGCAuk volunteer]

Hi.

You need to discuss with Rheumy - early days of GCA its probably not recommended- but get advice and a letter confirming that if she agrees. As PMRpro says did you declare it on your travel insurance? Did you have diagnosis when flights were booked/paid for?

I flew to NZ with GCA but was down to 6mg, not sure I would have if I'd still been on 30mg and things weren't 100% under control.

I know it's very disappointing but if it's not for a special occasion could you postpone for a few months? I'm sure everyone will understand. Plus you'll probably enjoy it more if you feel better.

But as PMRpro says, someone else may make the decision for you.

[SheffieldJane]

Once you have taken all the sage advice I really, really hope you can go! It sounds just the ticket. Let us know! Everything crossed for you.

[Joyful13]

i just returned from a 3 week trip to Maine to visit our daughter and family. We live in northern California, so it was a long flight. I have PMR and GCA. I was on 40 mg of Prednisone for a GCA flare. I had a wonderful time with our grandkids. I took a nap every day when my 3 year old grandson took a nap. That really helped me through the rest of the day. You really have to pace yourself when at these higher doses of Prednisone. I wish you the very best when you go on your trip. ❤️😃

[Janann25 in reply to Joyful13]

Thank you so much for your positive wishes. I'm hoping to speak with my rheumatologist this week, to ask her whether she thinks it's OK for me to fly. My insurance company have assured me - verbally - that I'm covered but, if my rheumatologist agrees that I can go, I shall insist on having the insurance company's assurances in writing!!!! I definitely don't want to take any chances😉 Again, thank you for your best wishes 😎

Jan