I have travel plans to Europe for the beginning of next year, and I am fearful that I might have a flare which makes me almost immobile. I am still new to PMR and don't know how to prevent a flare due to possible stress and such. I already booked the flight and would not like to cancel.
What would be the forum's recommendation?
Hi erika, personally I would up my daily dose a few days prior to departure so that I would be well covered and slowly reduce once in Europe. To me it is better to know that you will be pain free before and during your stay. Try not to be worried and nervous about your trip, try and change your mindset to look to be excited and forward to it.
Others may disagree but thats how I would deal with it, good luck and enjoy your break when you finally go. Dave
Oh how I spympathise with you! I have my heart feeling and then I have the establishment (medical) opinion. I can exist not live on 7.5mg a day topped up with a bit of extra paracetamol or ibroprofen and the odd shot of cheer or I can start the day with 10mg. On the former I exist on the latter I live.
Only me me live the my life on a day to day. The profession give me their considered opinion but its me who has the pain and struggle. At 10 they nag and tut at 7.5 they are are pleased and talk of seven and five but I want to be free to maximise every day. So I take my 7.5 mg daily then have ten for a good one.
Having a bigger dose to enjoy your trip make sense and throttling back quickly to base rate dose not loose the plot!
i have two special friends one a recently retired senior partner in a local GP practise and the other a consultant psychologist. The first nags me to get off steroids the second says take as much as you need to live and have a smile on your face!
Best wishes and enjoy that holiday,
Call me a rebel!
I've travelled quite a bit since PMR - USA, Oz, S Korea, Japan, all over Europe.
Basic rules: even if it costs a bit more do NOT travel to the airport, check in, fly to destination, get to place you are staying without having every rest opportunity you can insert. Travel to the airport the day before if it is a morning flight and more than an hour or so drive. If it is public transport - spread it out even more. DON'T schedule short transfers - if it looks a rush, change the arrangements if possible, or ask the airport for assistance, even if you feel it's OTT. There is nothing worse than trying to run for a plane connection!
Allow at least one day after the flight across the pond to recover - land, go to a hotel close by and REST. Do not arrange something you can't rest on or not do for the next day. For example, I flew to S Korea, got to the hotel and had to have dinner with the hosts at the University guesthouse - I nearly fell asleep in my soup and felt physically sick I was so knackered. But I went straight to bed then and slept for 12 hours, got up, took the taxi to the train to travel across Korea and promptly went back to sleep in my seat. At the other end I went straight to our room - and went to sleep again. David went out for a walk - it rained so my choice was good! But then I got up and went for dinner feeling great, slept again and was up for the entire 3 days tour we did. I have to confess there were a few more steps at the temples than was good for me but I managed it fine.
Consider: could I do this at home? If you couldn't - how can I adapt/avoid it. Never plan to do two "busy" things on consecutive days - if you feel fine you can add something in on the free day but don't make it so you MUST do it.
DON'T try to reduce dose while you are away or in the few weeks before. If you are well at a dose 6 weeks prior to travel - stay there. I take a slightly higher dose the day before I travel, not very much but it helps - especially for the "long day". I don't fiddle with times and doses otherwise.
Are you Americanised or still basically a European? Think hard about museums and queueing and walking and heat and standing and waiting and... You get my drift! A gentle wander around a European city, from cafe to Biergarden to cafe, is one thing. Following a tour guide as they race from tourist attraction to tourist attraction is another! Is Venice on the menu? Walking in Venice is something else - 50 yards max before you go up and down steps in the form of a bridge over a canal, rinse and repeat. And the cafes cost a BOMB!
But you will have a whale of a time and it will be fun - as long as you allow for rest! As tavidu says look forward to it and you will have a great tim even if you don't do the Louvre, the Uffici or any of the other "essentials". The Louvre was fine for me in half a day, the Mona Lisa is greatly overrated. I still haven't been to the Uffici! There is a replica David on the piazza outside - opposite a cafe!
Like the sound of your consultant psychologist!! What is the point of taking less steroid so you live longer - but spend your days wishing you didn't have this in front of you for the foreseeable future. Or thinking you might avoid a broken hip - but are in the wheelchair now.
There is a retired GP on another forum - who wa slike your friend. But now she has PMR and sees it like your psychologist friend.
Dave, thanks - this makes sense to me. I am only there for 1 week, and hopefully upping the daily dose will work. Thanks for your input. Much appreciated.
Erika
Right...be daring...and take as much as needed to live and have a smile on my face....that's the way!! It is the rebel's way! :-)
Thank you for your message!
Eileen,
Thank you so much for your helpful travel tips. You did have interesting travel experiences. Amazing....you managed!
I am basically still Eurepean in many aspects and have seen much of Europe. Luckily FINALLY visited Paris with my daughter and family 2 years (before PMR) and saw all the beauty of the city. I have been to Tuscany three times.....I am VERY fond of Italy.
This time I would like to attend my brother's 80th birthday celebration close to Munich.
I have a direct flight from Portland/San Francisco to Munich, and luckily I only live 20 minutes away from the airport in Portland, and the flight leaves in the afternoon for San Francisco.
So far so good......I am anxious about getting a sudden flare and I would be needing a wheelchair. Don't really want to arrive in a wheelchair in Munich.....
I still have time to get over my present problem with Scroiliacitis, and I am not leaving until mid February, but want to prepare myself for what might happen, and hopefully don't need to cancel my trip. 3 weeks ago I was in bad shape and would not have been able to travel.
Thank you - thank you for your good advise. I'll hope for the best, and try to be a "rebel" and defy the odds.
Erika
Best of luck with the trip Erika. I can't add anything to what's already been said. Having not traveled much since the start of PMR I can't add any personal comments, but what I've read here makes sense.
Thank you, John. Yes, it does make sense, and I will give it a try. The problem is, the unexpected can happen out of the blue..... I will report......
Hi Erika,
I have had PMR for 18 months now and have traveled extensively (in Europe - 2 months at once) in that time frame. I made sure that I had enough medication (in my suitcase) to last for the length of the trip, plus an extra week. On top of the extra weeks medication I also took a full weeks of worth of meds in my carry-on luggage. A copy of my doctors official prescription accompanied me just in case I had a problem.
If for some reason you lost your medication, you can always email or fax your original Pharmacist for help in getting the correct meds wherever you are.
This has worked for me several times now on cruises, hiking trips, rafting trips, sailing and general travel.
The only thing that might adversely affect you could be the time changes. I ended up taking a extra dose because of the time zones by sticking to my regualar time table.
Good luck and don't worry,
Shawn
If what you are coming for is German birthday party - I don't think you need to worry too much!
Let's put a wheelchair into perspective: do you wear glasses to help you see your brother clearly? Would you take them off to go to the party? Would you remove your hearing aid if you needed it to hear what was going on around you? If, when fully healthy, would you insist on walking the 3 miles into town to do your shopping to take him a present?
You wouldn't would you? Think of the advantages of arriving in Munich feeling at your best possible to be able to enjoy being with your brother and his family. You will find the long flight will almost certainly leave you stiff when you arrive - although Munich is a small airport there is still a fairish walk if you are feeling stiff. It isn't like many big airports with loads of moving walkways to reduce the amount of walking needed.
You could have arranged the trip and then found you had a bad back even without PMR. You know about the sacroiliacitis and it is being worked on - you could have been flying last week. If you had a flare you could have a cortisone shot to tide you over if necessary. And if you can get to Munich there is a lot of good complementary medicine easily available which will help a lot if you need it.
There is no point worrying about what might happen - we would never do anything again. And THAT would be silly ;-)
Thank you for you caring thoughts in regards to my travel plans and worries about PMR. If need to be, yes a wheelchair would be of help if I am unable to walk. As I am learning to adjust to my life WITH PMR, I will worry less and will know how to protect myself with less stress, work, lifting and getting more rest as I feel I am more tired than I used to be.
I am happy that the therapy for the painful Sacroiliacitis is helping and I can finally turn over in bed without discomfort. 2 weeks ago I could not get out of bed and walk without extreme pain. Carrying a heavy plant up the stairs was not a good idea.....I think this brought it on. I live and still learn! :-)
As always your thoughtful advise is very appreciated.
Erika
"Carrying a heavy plant up the stairs was not a good idea..."
No - probably not!!!! Next time - get a man in!
Thank you for your good advise. I will ask my doctor for a letter explaining my condition for the airline, and a prescription just in case I am in need for medication. I should worry less and look forward to my trip!! :-)
And when you travel - have pred (and anything else essential) in your handluggage, pred in your checked luggage - and a supply in your travel companion's luggage too if you have one! Never hurts to have too much - but it's a pain having to replace it.
Yes, I will !!! Now, I know better.
Yes, I will remember taking pred in my checked and hand luggage. I am widowed and I will travel alone. I have a widowed friend but he does not travel anymore. We used to explore beautiful Tuscany a few years ago.
Like you, Erika, I was still new to PMR when I traveled to Europe from Australia this past August. Diagnosed in mid June (though suffering for at least a month prior to that), I traveled in mid August to France. At that time I was scheduled to taper from 11.5 to 10mg prednisone. Luckily, I have a great friend who is a very “cluey” nurse and told me to put off any kind of adjustment until I got myself to my destination and settled. As I was “clueless” about prednisone, I followed her advice and I am thankful I did. Because of my new condition, my husband and I planned a stopover in Singapore. On arrival I did have aches that I was unaccustomed to and took 2mg extra prednisone. When I arrived in Paris, I was a bit stiff but could walk okay, though slowly. After resting a few hours, however, I was fit and ready for daily life activities (by my own standards). In retrospect, the trip was not that challenging but along the way I did take lots of opportunities to walk around airports and aircraft, particularly when other people were sound asleep. After arrival, my entire trip was excellent, so much so that I thought little about my “affliction.” On many occasions during the trip, I walked long distances, which included uphill and downhill and lots of staircases, and experienced no problems, but I always had long breaks for meals, etc.
I did have one surprising incident however. And it was not during the trip! It was three days after my return home. The morning I returned to Australia and disembarked the aircraft, I felt quite stiff. After arriving at my home, I had a bath and then a nap later in the morning and took my prednisone earlier than usual. I was okay for two days BUT on the third day I had a flare! Had I been less “clueless” about prednisone, I would have increased the dose, but I just thought that the pain was something that would pass. Finally, I upped my dose by 2.5mg and stayed there for two weeks before getting back to my regular dose. Had I been more attentive, I probably could have avoided a full flare.
So, if I can add anything to the discussion here, I would say have a great trip but exercise care on your return. We are all different but I think sometimes when we come down from the “hype” and all the wonderful experiences of a trip we may need to take it easy as we get back into our ordinary lives. Like the phases of the moon each month, I think the time zones of the earth have their own energy forces that we mortals do not always understand. At any rate, I think traveling with PMR is totally doable, as long as precautions are taken. Have a great trip!
Yes - the time adjustment is a massive stress and probably the most difficult thing to anticipate. Your adrenal glands work first thing in the morning to produce cortisol - the 11 (?) hour time difference between Europe and Australia puts that at a diametrically opposite time to where you have been for a few weeks. It is bound to cause problems.