Like Bob, I would say go - but it WILL depend on how YOU are. I also travelled from Europe to the USA shortly after I was diagnosed for a 4 weeks trip, including an international meeting, visiting friends and a lot of driving! I didn't drive on that trip but since then I have driven all over Europe - we have a holiday apartment in northern Italy where we spend all the winter and a lot of the summer (we both work freelance so can be anywhere we like!). I had had PMR for about 5 years before it was diagnosed so had been used to travelling and being tired and stiff. Then I had a really bad flare which really made doing anything difficult - I wasn't allowed to drive for a few months for another medical reason (wrong dx, but hey ho) and that was when I realised how much I depended on being able to use the car! However - I set off on my own and travelled by bus from the north of England to London, flew to Innsbruck and caught the train to here! I then spent 3 days in bed recovering
However - it will be up to you to judge how you feel. I'm not male, but it is a fact that men often experience PMR in a totally different way to women - no one knows why, possibly the hormones, possibly something to do with the muscles - and also experience steroid treatment very differently. Some of the ladies on the UK site have found themselves very limited in the first few months of PMR and wouldn't have managed a longhaul flight and an 8 day holiday. There is also the time difference to consider - and what are you intending to do in those 8 days? Is it going to be a "Monday = Rome, Tuesday = Florence, Wednesday..." sort of trip? In the last few years I have done a Japan trip (pre-dx) that was partly like that - after the 4-day see Japan part of the trip I was very very tired and very grateful for the congress that let me rest a bit if I needed to! Last autumn we were in Korea and that was easier after a year on steroids but I still had a couple of days when all I could do in the evening was lie down and sleep. That said - I wouldn't have missed it for the world!
How long does PMR last? Well - here too, it all depends, how long is a piece of string! A review of several studies suggests that about 25% of patients with PMR get off steroids inside a year and 50% or so within 2 years. The ones who are on steroids for a shorter period of time are more likely to have a relapse within a few years. The other approx. 25% need to remain on steroids for a much longer time, some may even need a low dose for several years, some for many years. The information "PMR burns out in 2 years" seems to be a somewhat optimistic generalisation
Steroids don't cure PMR - they control the inflammation that is the cause of the pain and stiffness so you can manage the disease and have a decent quality of life. They won't stop the fatigue if you are a person where that is a big component of the PMR. The idea is to start with a dose that is enough to reduce that inflammation and then cut the dose down to as low a level as possible, where you can function well at a lowish dose to reduce the spectre of side-effects. Some people find they are pretty much pain-free on steroids, others find they always have some pain and stiffness but it is liveable with. One of the most important aspects of living with PMR is the management side: not just managing the inflamamtion with the steroids but also managing your expectations. You have to accept that this is a longhaul journey and everyone is different both in their PMR to start with and their ongoing experience with steroids and PMR. You may be like me and have few problems - but I am happy enough to take steroids at a dose that leaves me able to have a good standard of living and I have had almost no side-effects - or you may be like some other ladies I know where they are still quite limited physically or are unable to tolerate the level of steroid that would leave them pain-free. One lady I know used to walk 10 to 15 or more miles a day on their holidays - at present she struggles to get to the shop. And she struggles with that fact, she was desperate to get back to that but is slowly beginning to see that she may have to be much more patient and learn to appreciate what she IS able to do. Other people struggle with the concept of needing medication at all and steroids in particular.
Another small point is that you may be OK at home on a given dose of steroid - but the stress of travelling may be a bit much and you get symptoms again. Many of us deal with that by taking a slightly higher dose for the duration of the trip and until we are back to our normal routine - with our doc's approval of course! Any stress can make PMR symptoms worse - travel, an infection, an accident, family problems, work problems. Even if you and your doc were planning to try a reduction in your dose - if you have a week or two with anything like that coming up, it's much better to wait until afterwards. Choose a couple of weeks where there is little planned or you can be flexible before reducing the dose and allow time to rest if need be.
This all sounds so complicated, I know - but as time goes on you will learn to live with it better and better,
keep in touch and let us know how you are getting on - and all about your holiday! Where are you going?
MrsE
As always, I enjoyed reading your informative post MrsE. I see my rheumy tomorrow. I really think my dx is PMR rather than RA, so I am hoping he will clarify that. Also looking forward to another reduction of my Prednsione, since I am still on 20 mg (down from 60 to start). Planning a driving trip to Minnesota in April, so thanks for the travel tips. I think driving is easy - you can stop and have a stretch anytim eyou like, not like on a plance can be! And if you are too tired to carry on - stop for the night! Never make any plans that are carved in stone - and that is a good rule for the rest of life with PMR too!
Happy holidays!
MrsE
Hi Phyllis, I saw your post and wanted to give you some encouragement about the traveling. I started my 2nd bout with PMR in Nov 2008 and went to a rheumatologist in April 2009 (took so long because my first bout was 10 yrs prior and it took me a while to admit my symptoms weren't going away). I traveled to Ireland in Sept 2009 and spent a lot of time flying (NC to NY to Dublin) and then a lot of time sitting in a car traveling around the island, and did fine. Then went to the Galapagos Islands in May 2010 and did a ton of hiking and snorkeling! And again, did fine. I don't struggle as much with fatigue as others with PMR do, so I'm lucky that way. Pain and stiffness are my main issues, which we all learn to cope with in our own ways. So go to Italy and have a great time! shar
Thank you so much Mrs. E. for all the great information. I am determined to do the trip to Italy in June. I never thought I would be saying that 2 weeks ago. I do have another question of concern. We moved to Florida 2 and a half years ago from Pennsylvania because my husband did not like the cold weather. We are not happy here and are seriosly considering moving back. My husband said that we could come here for the 2 cold months. I never minded the cold, in fact I am 63 and enjoyed skiing. Is the move to the cooler climate a problem with PMR? Thanks for your help. Phyllis Thanks Bob, You and other posts have encouraged me to go.The UK is permanently damp relative to here in the north of Italy! By that I don't mean that it rains ALL the time in Britain (it doesn't, honestly!) but I find high humidity uncomfortable and it is always rather humid when you live on an island, even one the size of the UK. There is also almost always some wind so you have wind chill to factor in. Winter temperatures in the UK are usually above freezing (daytime, about upper 30s in the north, upper 40s in the south) but it rarely feels like that because of the damp atmosphere and the wind. When it gets down to freezing in the south, around London, you'd think the end of the world had come!
Here, we live at 850m (about 2700 ft) and from November to March it is colder than Britain but also drier. How much colder all depends - we can have very cold weather, about 15F is usual but it can be much lower but not often for long at a time. Now, at the end of March, it is in the upper 40s here in the afternoon but with sun it feels much warmer and it can be much higher temps than that. In the summer, in July and August, the temperatures can be in the mid 80s in the afternoons plus blazing sunshine - but the humidity if lowish. We don't get much in the way of high temperatures and high humidity. Put it this way - there isn't really enough to make air-con necessary! We put the blinds down and shut the windows in the day and open them all up when the sun is gone to cool the rooms down for the next day. Doors/windows open at night is no problem as there are no bugs to worry about. And if you are too hot in the day - you go further up the mountain and into the woods where it is cooler out of the sun.
Here we do have winter temps that are below 0F, but not often. The houses are well insulated and not cold so it doesn't pose a problem. But I can go skiing at around 0F and be OK as long as there isn't too much wind and it is sunny. If it is damp I stay home! It's all about dressing right - and it's always an excuse to go and have a hot chocolate!
Damp and wind are bad with PMR I find - and I know when the weather is about to change, probably better than the met office! My ideal climate would be dry cold winters and dry summers with temps in the upper 60s and 70s - I'm not keen on very hot. So here is about as good as it gets with the odd exception. Florida doesn't appeal to me at all - far too hot and humid! But in the summer there aren't many places in the US that aren't too H&H as far I'm concerned
Good luck with your decision - moving house is a big thing. Our apartment was really a vacation place originally but is just big enough for the two of us. It's a bit crowded when the family comes but it would be cheaper to pay for an apartment for them when they come than it would have been to buy a bigger place that we don't need most of the time. We had lived abroad before so that wasn't a big thing and we still have property in the UK which counts as our main residence - we haven't cut all ties. We'd also lived all over the place so have no one place we would say is "home" with "friends", they are all over the world, and our parents are long dead. Our daughters ski so they are happy coming here if they can and since they (and partners) work in the health services they never have time off at the holiday periods for us all to get together anyway.
MrsE
thanks Mrs E.have just read your travel info and will take that all in when we travel to france end april.I find stressful situations really make me feel quite unwell since Pmr. this disease cetainaly makes you look at your life. please keep writing ,so enjoyable and helpful to read.take care ...keep well x
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