GCA & flying

[Janeval]

I am flying to Denmark tomorrow to see family (2hr flight) - first time we've been away since my diagnosis of GCA in January. I am down to 22.5mg of Pred - trying to reduce but still having some problems-i.e. some temple pain and this ongoing 'lightheadedness' and am a bit worried about what may happen. Am I best to increase the dose slightly before I fly tomorrow or wait and see how I feel over the next day or so?My Rheumy has been wanting me to go on Methotrexate - which I am resisting at the moment- as this is the third attempt to get down from 25 to 20mg. I am taking it very slowly this time and have not reduced now for 3 weeks (to take into account the flying and being away).

Any advice on increasing/staying the same dose over the next few days? He also told me to wear my pressure socks but how long after the flight should I leave them on?!

[DorsetLady PMRGCAuk volunteer]

Hi,

If you are still having some symptoms then you really shouldn’t be considering tapering - with or without your trip.

I’d be inclined to return to 25mg - and stay there whilst you’re away… plenty of time to try tapering when you get back home.

[Janeval in reply to DorsetLady]

I was actually thinking of doing that, so I'll take the 25mg today & until we get back next week. Thank you.

[DorsetLady PMRGCAuk volunteer in reply to Janeval]

Good idea. Enjoy

[Bluey-1]

Ditto to DL’s advice. You might want to book airport assistance if you tend to have fatigue hit when queuing, going through security etc. We’re all different. I was never great at airports prior to GCA. I really have to plan trips carefully since diagnosis. Take plenty of pred with you and build in rest times while away and enjoy your holiday.

[Janeval in reply to Bluey-1]

We're going from a small airport especially for that reason, so shouldn't have queues etc. I have plenty of extra Pred with me & yes, we are staying in an air b n b so that I have a quiet base to go to if I need rest or time out. Fingers crossed everything will be ok.

[PMRpro Ambassador]

To be at 25mg after barely 6 months is pretty good - and there is no proven record for MTX in GCA unless there is new work I haven't come across.

Personally, for a 2 hour flight I wouldn't bother with flight socks at all but that is me. Do the recommended foot wiggles etcetera.

stoptheclot.org/in-flight-f....

Who are you flying with?

[Janeval in reply to PMRpro]

We're flying from our small local airport-Humberside- as there is no way I could cope with a big airport at present with queues, delays etc( Ryanair!). Cost us a lot more but I wouldn't be going otherwise & it's over 6 months since I saw my son & granddaughters, so well worth it! Yes, I do get fatigue but at least we won't have the queueing & hundreds of other people to cope with & it's a much smaller airline-Eastern airways- so hoping all should be good. I agree about the MTX but my Rheumy seems to be adamant that's the way I should go. That's something I have to talk to him about when I see him next.

[PMRpro Ambassador in reply to Janeval]

As a bus service, Ryanair is OK. They all have problems these days! Have a lovely time.

[Janeval in reply to PMRpro]

Carrying on from earlier- I now have 11 hours before we fly & I don't know if it's just anxiety & worry but my head has been 'prickly' on & off all day. I feel ok but I have had some mild temple pain off & on too. I'm panicking now about flying & don't know if this is the problem. I upped my Pred this morning from 22.5 to 25mg - & I'll do the same tomorrow ( or maybe more?) or should I be going? My son, his wife & my little granddaughters are so excited we are going but I'm just wondering if I will be ok?

[PMRpro Ambassador in reply to Janeval]

Denmark has doctos and hospitals too! Stop panicking and relax. Just make sure you have plenty of pred in your bag in original packaging and if possible a prescription.

[Janeval in reply to PMRpro]

Yes I have plenty & I do know that the Danish health service is very good.

[Janeval in reply to PMRpro]

Carrying on from earlier- I now have 11 hours before we fly & I don't know if it's just anxiety & worry but my head has been 'prickly' on & off all day. I feel ok but I have had some mild temple pain off & on too. I'm panicking now about flying & don't know if this is the problem. I upped my Pred this morning from 22.5 to 25mg - & I'll do the same tomorrow ( or maybe more?) or should I be going? My son, his wife & my little granddaughters are so excited we are going but I'm just wondering if I will be ok?

[DorsetLady PMRGCAuk volunteer in reply to Janeval]

I’m sure it’s just you getting a bit stressed about things… maybe stick with the 25mg whilst you’re away… but take extra with you in case you need to follow advice for a flare -in this link -

healthunlocked.com/pmrgcauk...

..and breathe 🌸

[Janeval in reply to DorsetLady]

Thank you for your quick reply DL. I have plenty of Pred with me & yes, I will stick at the 25mg whilst we are away. I usually have anxiety when we fly & this is the first time I'm flying since diagnosis so I think I'm doubly anxious! I'll do my Yoga breathing & hope it works!

[DorsetLady PMRGCAuk volunteer in reply to Janeval]

Sure it will….

[Bluey-1 in reply to Janeval]

You’ll be fine. You have the extra pred if need be. Enjoy your trip!

[Janeval in reply to Bluey-1]

Thank you to all of you. You have all made me feel a bit better now. Don't know where I'd be without this forum now.