I was diagnosed with PMR and possible GCA in May 2017. Spent many months on 30 or 40mg Pred (long story!) but have now reduced to 7mg. I don’t have the pain associated with PMR at the moment but I get the dreaded fatigue, sometimes to the point where I just have to sit down. I have had a stressful time recently - a special friend is very poorly - and feel I need to get away for a while. I’m thinking of going to Tuscany next month - a holiday specifically for singles - but wonder whether I should do this in view of the stage I’m at with tapering. The holiday will involve visiting nearby cities but I could just chill if I wanted to do that.
Any advice or experience with this would be much appreciated.
Thank you.
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Janann25
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I’ve just come back from a fantastic cruise holiday, the second big one since being diagnosed. It was sooo good to get a away and I found being away from home gave me energy I didn’t think I had. I’d say holidays are great, BUT they need to be suitable and NO reducing, even go up a bit. My first holiday meant I had to stay on 18mg for 5 weeks. At first I got stressed about it but frankly my body enjoyed the lack of withdrawal rollercoaster. Yes, 7mg can be tricky but you could add a bit for travel then play it by ear. A week on an extra mg or 2 isn’t going to add much in the grand scheme of things. I would also say, design it so you don’t challenge yourself too much and give yourself the ability and permission to bail out of activities without ruining your time because of expectations being too high. Planning and design are good investments. Make sure you are looked after and get as much assistance at the points of travel as you can. Of course travel insurance, good sun block, insect repellant and a good book.
Thank you for your reply. Yes, like you I enjoy cruising and have done two this year and, because of the leisurely lifestyle, thoroughly enjoyed them. The holiday I'm considering next month is an hotel stay with optional trips out. As PRMPro points out in her reply, this holiday could be rather more strenuous, hence my hesitation in doing it. Decisions, decisions!!
Do what you can - not what you feel you ought to! Build in rest periods/ quiet times.
As others have said - a bit of forward planning usually smooths the way - and don’t be embarrassed to ask for help.
Don’t even consider tapering until you have returned - take a few extra Pred just in case required - and medication and copy of prescription in hand luggage.
I've always felt better when on holiday, sometimes when being very active - in fact on a tour last spring I left my poor husband (who does not have PMR and is not on any meds except for eyes) in the dust! As the others said, make sure you build in rest times, and enjoy! If the fatigue is too much for you this is the one time I would suggest taking an extra mg, normally I wouldn't as you don't want to give the adrenals an excuse to slack off again.
Hi Janann25, I was diagnosed just recently like you and am currently in Thailand resting on a balcony. I get very tired in the afternoon and our group of 3 others just work around my naps. The trip here was a bit exhausting. I was in the process of tapering from 40mg and got down to 10mg before I was hit with GCA just before I was ready to leave for my holidays. So Rheumy boosted my Meds up to 60mgs and gave me a letter with the proviso that if I had any problems I would go to medical assistance. So far so good. Go and enjoy a rest but be very mindful of any adverse symptoms.
I see no reason why you shouldn't go on holiday BUT do think hard about what sort of holiday and what it involves.
Tuscany is wonderful - but it is very hilly! And it also depends when you decide to go - it can be VERY hot still in September. I've been in early October and it was still mid-upper 20s (I live in northern Italy).
Can you cope with warm temperatures and can you walk up (and down) hills - both at the same time! Yes, you can chill but often the tours start at one point and you are picked up at another - which does mean following the guide. If you just stay at the hotel you miss out on the company too and sometimes such holidays move from one hotel to another so that isn't an option. I did that sort of tour holiday in China and it was OK for me but we were up early in the morning to start the day's visits and moved hotels so I had to go too, however I felt. I've had many years of practise with PMR but when faced with a steep incline or loads of steps I do quail, even now
Thanks for your reply. As I've just said to SnazzyD, Ive enjoyed several cruise holidays since my diagnosis and I've also done a couple of trips to America but this holiday is rather different, being based in an hotel with trips out from there. I feel I could cope with the walking but I hadn't realised the weather would be quite so hot - according to the travel company it would be 23-25C which I could handle but upper 20Cs could prove too much! I've got a feeling the decision will be a "NO" 😢 ...............
It rarely has gone above 25C - but at the beginning of September it may be higher in the afternoon, mid September to mid-October are the best, And 25C in full sun is very warm!!
But every year is getting warmer - and we do notice it. So it very much depends WHEN in September you are going. At present they are forecasting 35C for 24th August - the first week of September may not be signifiacantly less. For example, mid Sept 2018 in Pisa hovered in the upper 20sC/upper 80sF.
Dates are 21 to 28 September. I would really like to go because my birthday is during those dates and I didn't cope well on my last birthday because my husband had passed away. But the tour company still has availability at the moment so I'll leave it for a while and see how the weather goes. Thanks again for your comments - much appreciated.
Don't get me wrong - if it were a gentle relaxing holiday with the odd outing to a wine tasting (Tuscan ones can be superb!) and the like I'd be there with you! But city sightseeing may be another matter ...
I'm very grateful for your comments, especially as I now know your advice is as a result of you living in Italy. How lovely! I have taken the comments from you and the other helpful people on this forum on board and have decided to postpone the holiday. I've wanted so much to visit Tuscany but I think I'll start looking for next spring, in the hopes that I'm even better by then.
Are there not gentler holidays on offer? I have to confess to taking our campervan to a site in Tuscany and just sitting looking at a view - which is often far better and far easier from a B&B or hotel. There are some lovely ones.
The holiday, done in the right way, will probably do more to help your symptoms and your future tapering success than just trying to cope at home and follow a rigid tapering timetable.
If you have been experiencing alot of ongoing stress lately because of the health of your friend and you are feeling the Fatigue of it , a tapering holiday would do you good too.
You shouldn't just carry on regardless to a strict timetable as you taper but adjust when you choose to start a new lower dose based on what is going on around you.
Big family events , extended stress , a time of alot of physical activity , illness , injury or a holiday are the time to stop a taper , as trying to do both at once brings on a blow back in inflammation in pain. Then you are having to increase your dose and undoing all the good work anyway.
I say stay on your current dose while you cope with the stress and the extra physical effort of preparing for a lovely break away.
Pack slowly from now leaving about 3 days before your travel day so you can build up your energy.
Get Airport assistance and rest on your first night .
Pace everyday with some activity and some rest stops in a nice cafe .
Have a siesta or sit and lunch in a cool spot or on a bench in a gallery in the heat of the day.
If you do alot of walking one day , choose a lazy day by the pool or in your villa with a good book the next.
Duck out of organised activities when you feel like it , relax or have a light adventure on your own.
Have a chair on the beach not a towel , and a spritz bottle to refill with water to spray your face , neck , feet and wrists and keep Heat Fatigue at bay. And always carry a bottle of drinking water.
Don't plan too many activities , you are not going to " Do Tuscany" but have a holiday which you can rest and recuperate on. So , choose the top 3 things you really want to do , and then wing it for anything else.
Pack your things away as you go so that packing is easier on the day before you leave , and have a restful evening before you travel home.
Always take help along the way , if you have someone there to carry your bags , chair , YOU , all the better.
If it is a singles trip , enjoy some conversation but don't feel forced to make great friendships and lose your time to yourself.
Most importantly , don't start a new taper until upto a week after your trip when your body has had chance to recover from the extra activity .
That would be my plan anyway.
Take the trip , relax the taper , it may just help you get a bit of your old spark back in many ways. And the added energy , happiness and strength in your body will make the next stage of tapering smoother too.
Take care , and I hope your friend also improves soon . Bon Voyage xx
Thank you for your reply and I know your advice is absolutely right. But what I didn't make clear in my original post is that the holiday involves guided tours and it can be very difficult to take a rest when the tour is moving on. I know I can choose to stay in the hotel instead but the whole reason for thinking of doing this trip was because I so want to see more of Italy. The advice given to me on this forum has helped me to realise that Im probably not up to this type of holiday just yet. So, I shall be spending some time now looking for a holiday in the spring. Again, thank you for your reply.
I see your decision has been made, informed by others’ responses. Tuscany will be there next spring, and perhaps you can plan something given your abilities and how you are feeling at that time. I’ve never been to Europe....yet, but Tuscany is on my list.
My husband and I went to Puerto Vallarta a few years ago in Feb (from Canada), when I had been suffering with symptoms for 3 months, but not yet diagnosed with PMR. We stayed at an all inclusive resort, the food was amazing, and I was able to swim and do exercises in the pool, get relief from the hot tub, play ping pong, and manage a day trip to a shopping area. Some walking, but limited. It was the right type of vacation for me during the dark months of pre-diagnosis and did my mental health, and my relationship with OH, the world of good.
Last Feb we went to the Miami area in Florida for 10 days, staying in an upscale hotel in South Beach for 3 days, and an Airbnb apartment in Little Havana for a week. I had a knee injection the day before we flew out (I’m awaiting knee replacement surgery), and was on 9.5mg tapering from 20mg the May prior. We had an amazing time. I walked for miles most days, swam, went dancing one night, plenty of lazing on the various beaches we visited, day trips to Key West and other areas. It was the first time I actually forgot I had PMR, and getting away really helped me feel “normal” if that makes sense. I’m able to “reset” on vacation. I also took an extra mg of pred on travel (flying) days.
So each vacation I was in a different place on this journey. To recognize your abilities and mindset is a gift of self-care, and planning accordingly contributes greatly to the outcome.
Do try and plan something for your upcoming birthday and truly celebrate you. Even a weekend away with someone else doing the cooking, and some lovely scenery is a treat you deserve.
What a lovely reply. Yes, I will try to find a short break in the U.K. for my birthday then spend the winter months choosing the right holiday for me to look forward to next spring.
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