GCA

[Heycarol]

Hi all ,

This is the first post for me , just been diagnosed with GCA after feeling unwell for about a month , I am on 40 mg of pred , and painkillers, due to go on holiday in 2 week to Las Vegas. Was a present for my 60th birthday, will this illness affect my travel plans , I have quite a stressful job , working 65 , 70 hrs a week , and I've been able to carry on working as normal , would be great if anyone could give me a bit of advice , due to see a rumatoligest on wed , do you think they will advise me not to go

[DorsetLady PMRGCAuk volunteer]

Hi Heycarol, and welcome.

Having GCA shouldn't stop you travelling, you just have to do a bit more in the forward planning line. Make sure you have plenty of tablets, take a copy of your prescription ( both in hand luggage), let your travel insurers know you have GCA. Get assistance at airport if you need it, there's always a lot of walking to do!

Not sure if you're in UK or USA, but if UK you may need to take time difference into consideration with your tablets. Am guessing you're in US where it shouldn't be a problem, but I may be wrong.

As you've only just started Pred, you may find initially you've got a lot more energy than recently, and sleep may not be good until your body gets used to the drug. But, as with all things, your body will acclimatise, although I would suggest you may seriously need to look at your work. Most people on this forum have already retired, and those that haven't do struggle with their workload, in fact I'm full of admiration that they can hold down a full time job, I couldn't have at the start.

I think the main thing to remember is, you have a long term condition which is going to affect your life. You have to learn to pace yourself, which most people find the most difficult, and not try and do half a dozen things at once like you used to! Fatigue is a big factor - it can be caused by both the GCA and the Pred (after the initial hit) and you can't fight it, so you have to learn to accommodate it in your life.

Learn as much as you can about GCA, then things won't come as a surprise. There's lots of information on the PMRGCAuk web site, plus think the Mayo Clinic has good advice, try reading Kate Gilberts book - Living with PMR GCA - A survivors guide - available on Amazon.

Sure others will add their advice, and please come back with any questions you have - there will be plenty along the way!

Most of all though, enjoy your holiday, and happy 60th, whenever that was/is🍸🍾

[Heycarol in reply to DorsetLady]

Hello there Dorset lady ,

THANKYOU so much for getting back to me , and no doubt I will have many questions , I am not feeling to bad at the moment. And like you said the pads are giving me a lot of energy, so I have no problems walking anywhere, but not sleeping to good

I am a manager of a members bowling club and like I Seid the hours are long as I also do all the catering for the functions that get booked I have got three this next two weeks , and only get one day off ( Monday's )

I was quite worried that the doctor wouldn't let me travel but in the back of my mind I was also thinking that if I can work all the hours that I'm doing at the moment then I am sure I can be pampered for a week and have a break,

I live in England , very near to Manchester, THANKYOU once again for replying and I'm sure we will talk again and if I'm allowed to go on holiday I will make sure I enjoy it thanks !!

I will talk to my insures and inform them about my condition as I am insured for worldwide travel through my bank , but would think I will have to pay a premium on top

Thanks once again for your advice it is very comforting to know there are people out there to help especially when you are at a low xx

I

[PMRpro Ambassador in reply to Heycarol]

Usually your insurance will cover you for new events until the end of the insurance period. You might come up against premium increases for the renewal but sometimes it won't be a lot.

Don't be surprised if your rheumatologist is wary about you travelling - I know some really don't like their patients being away in the early days of GCA and taking pred as you don't really know how you are going to respond. It's one thing remaining in the country but the flight to Las Vegas is a long one.

[DevonMichael]

Hi Heycarol

Welcome! I too am new so may not be able to give much advice. I did my first posting this week and got a lot of helpful replies and tips as I am sure you will. This site is really useful as there are people from recent diagnosis (mine was in June) to those with more than a decade. I was started on 40mg and to be honest I never had so much energy! Needing little sleep (I was wide awake at 5am) and with an increased appetite my wife was amazed at transformation. However she has noticed I am less hyper now on 20 mg. You might ( if not already done) want to get membership of PMRGCAuk as well as contacts useful information from their newsletter, you will be supporting the cause to raise awareness and research.

I boasted my health and virtual nil sick absence record over a 44 year working life to be hit with GCA three years into retirement. Now like others I have to adjust to a new life regime hopefully with the knowledge and wisdom gained from others.

Good luck!