Although I have had PMR for 4 months I have now been diagnosed with GCA also. My mind is in overdrive at the moment but am sure I will come to terms with it soon. I have been referred to a Rhuemetologist but the specialist I saw at the eye clinic is happy for me to stay on 20 mg of pred. I'm seeing my GP tomorrow (She has been brilliant so far) Are there any particular questions I need to be checking with her? Also I have a holiday booked for later this year & was was wondering whether a 10 hour flight is a problem. (I hope not as it's paid for ) Has anyone had issues with flying? Many thanks for your time
Pat
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patdencass
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I hope you already had cancellation insurance just in case and had told them about the PMR.
I went to the USA a few weeks after being diagnosed with PMR and given pred - I'd had undx'd PMR for 5 years by then but it had only got really bad a few months earlier. The pred did allow me a fairly good trip although I was very tired and couldn't walk far. The following year I flew to South Korea which is a much longer flight. When I got there I was SOOOOO tired and went to bed in mid-afternoon and slept almost uninterrupted for 14 hours before getting up at stupid o'clock, transferring to a train for a 5 hour journey to the other side of the country. I slept on the train and then went to bed in the afternoon at our destination. After that I was fine. I dealt with the time zone changes by taking a one-off larger dose the day we travelled so it was enough to take me to the next morning even though it was a 30-hour day (does that make sense?). When it was a short day I just took the normal doses.
The only problems I've had with travelling long haul is the size of those dratted seats! I'm small but even I can't get comfortable and that does tend to make you even more stiff than normal. It is a good idea to get an aisle seat - more leg room and easy to get up every so often and stretch, you can't do that in a window seat. The other thing I find difficult is the sitting around waiting on horrible uncomfortable plastic seats - especially on the long haul flights where it can be hours if you are unlucky - and the walking around the airport which sometimes feels MILES! You can book assistance, no idea how mind you.
But remember travelling is VERY tiring anyway and changing time zones makes it even worse. Don't attempt a dose reduction just before or during the trip and make sure you have about 10 times as much pred as you need for the holiday and pack it in several different places - in your hand luggage, spares in your suitcase, your companion's hand luggage and anywhere else you can think of. I would even have a pack in my pocket that never leaves me! Take a docs letter and a prescription with you - they won't get you the medication but if necessary they can see what you are taking. It is possible to get printed cards with the illness and medication in the local language just in case you needed medical treatment - particularly the fact you are on pred, you must have your regular dose or you could be ill because of sudden withdrawal, especially at higher doses.
The other consideration is "what sort of holiday is it?" - are you and your companions going to be able to enjoy it? Does it involve a lot of walking? Stairs? Temperature - some people find excessive heat or cold difficult on pred. One friend with PMR had a safari trip planned and not long before they were to go she realised there was no way she could do all the activities that were part and parcel of the trip. She says now she is so glad they cancelled it and did something else - she'll go on safari another time when she can have to full benefit. The longer term effects of a higher dose of pred can be uncomfortable - and it isn't until you have been on it a while that you notice what has become more difficult. Some people become very sensitive to sun, others don't sleep well. Often when you are travelling you have to be somewhere at a specific time - and for the first couple of years of PMR that was still a problem for me. I would feel as if I had hit a brick wall and all I could do was sit down and preferably go to bed.
Where are you going? Do you need jabs? There are some you can't have - when on steroids you must not have any "live" vaccines and there are a few for the tropics that we must not have. It doesn't affect you going there if you choose not to have them and accept the risk - but it MIGHT be an issue on returning to the UK or countries you travel through if there were an outbreak of whatever whilst you were there. Some countries impose a long isolation period.
I know this all sounds a bit depressing and none of it may apply to you but you'll find that out later and it is a good idea to really think about it now and not bury your head in the sand.
Can you post photos on this forum? We have a thread for holiday/pet/garden photos on one forum I am a member of
Dear PMRpro many thank for your really informative reply. I have travel insurance with my bank but didn't give any thought to my PMR when I booked flights. It was only on the diagnosis yesterday that it registered that I might have a problem. My main worry was whether I would need additional insurance and it sounds like I will need to check with the company.
The tips you gave me were really useful - many I hadn't thought of. I don't think the holiday itself will be too difficult as we are staying in a villa owned by family in America. We have treated ourselves to an upgrade for flights & will do as much as I feel able to when there. No Vaccines needed - PHEW.
When you take steroids with the time difference how did you work out when to take them?
We are not going until October so hopefully my head will be clearer by then.
I just took my pred in the mornings as usual. Flying to the USA is just really a very long day so I took a bit higher dose that morning before leaving and took the next dose the next morning. I only have PMR so I would check with your doctor what they think since you have GCA too but I can't really see why it would be a problem. The other option would be to take the usual dose in the morning and then an extra bit later in the day and the normal dose next morning - but ask the rheumy.
Your main problem with the insurance will be if they decide you didn't give them all the info at the time of "taking" the insurance. An insurance you have prior to developing a condition should be valid but I have no idea what counts as the start of a new insurance when it is these things that come automatically with a bank account. And then there is the problem of renewal. The bank ones are very basic usually and very unaccommodating as far as I know. There are companies that specialise in medical conditions and google is a good way to start. But ask several, don't just take the first. Some are a real rip-off and they charge you an arm and a leg, others simply add a moderate amount for that specific risk. Osteoarthritis added £3 to one policy I had - quite how that makes a higher risk I'm not entirely sure, you're hardly likely to request a hip replacement whilst abroad on holiday are you! But start by asking your bank - I remember someone getting cover no problem with PMR. GCA is a slightly different matter though although if your dose is good enough it shouldn't pose a problem. But give them the option!
Whatever you do DON'T go to the USA without proper cover and make sure it includes air recovery for repatriation. I have that as part of membership of the Weisses Kreuz, our local version of the Red Cross/St John's Ambulance service - a major benefit of a donation to keep it going. I don't know if there is an equivalent in the UK.
I was diagnosed with GCA/PMR in October and I'm off to Tenerife for 10 days on Tuesday with the blessing of both my doctor and rheumatologist! Currently on 35 mg having done one reduction from 40. Only a four hour flight and no time difference in the Canaries so not quite so many considerations for me. But do tell your insurance company - if you don't and you get ill, even with an unrelated condition, they are unlikely to cover you as you have not declared a 'material fact' (can you tell that I was married to an insurance agent??) I got insurance cover through All Clear and the GCA only upped the premium by about a quarter - though cover for America will no doubt be much higher than going to Europe, but it really isn't worth taking a chance. A friend of mine was taken ill with meningitis in the US and her medical bills topped over $100,00 dollars!
I have PMR and have been abroad a few times in the last year - all fine; no problems. I was worried the first time as we were going to Cuba which felt a long way from home and I was unsure about medical matters out there. I did inform my insurance company pre trip - no extra charges for PMR - and a note was made on my file (Barclays ins). I usually take my Pred at 7.30am and made sure my next doses were 24hrs later and then spaced the same on holiday. I haven't had any vacinations since being on Pred - apart from the flu jab. That was ok. Hope you get away and can enjoy your holiday!
It is important to give the insurers your medical details. The 1st year I had PMR/GCA we had to cancel a cruise at short notice as the week before the holiday I was given new medication & required a weekly blood test for a month - besides feeling ill that put paid to any travelling for the next month. I'm insured through Lloyds bank with AXA, just a small amount extra to pay; there was no problem with the claim, just lots of paper work & waiting! Enjoy your trip.
I went on holiday which included a 10.5 hour flight just months after my diagnosis. I contacted my insurers and had to pay a small increase to have the PMR covered - they did say I did not have to do this but they would not cover me for any PMR related incidents if I opted out. I didn't take any chances and happily paid up (it was under twenty quid difference)
I did find the jet lag was particularly brutal and adjusting meds with time zone changes led to a couple of rather sore days but other than that all was fine.
I think a lot depends on the type of holiday...I went to the USA, stayed in a 4 star hotel in a major city close to excellent medical centres so the rheumy was fine about me going...he said if I had a jungle trek planned or was going camping in the desert he would have said no to going...as if I would do anything that energetic or adventurous. Spa all the way for me
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