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How is PMR affected by long haul flights?

Posted , 8 users are following.

maureen28sk
maureen28sk

I have had PMR for a year and have painful flare ups and always have problems with fatigue, specially when I have had two busy days together.  I feel completely wiped out.  I have been invited to go to New Zealand in Feb next year which will be quite an active holiday.  Has anyone any experience of long haul flights and the effect of jet lag on PMR?

0 likes, 28 replies

28 Replies

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  • EileenH
    EileenH maureen28sk

    Posted

    I have flown from the UK to the USA, South Korea and Australia since my PMR started. I never plan anything I must do the first day and try to rest. In Korea I slept for 12 hours, moved to a train and slept again - after that I was fine for the rest of the trip. Think hard about the activities - can you REALLY manage them every day? Can you REALLY manage steps? Hills? Could you do it at home? Can you cope with running through an airport if there is a tight connection? Can the airline offer disabled assistance?

    I take a larger dose of pred in the morning on a day where crossing time zones means the "day" will be more than 24 hours and that has always worked fine. On a "short" day I just take a normal dose. Going to Oz we had 2 nights in Hongkong out and Singapore back - that really helped. 

    And someone suggested "your PMR could be well in the past by Feb" - I've had PMR for 10 years. I think it has gone now but I am still on pred, reducing. Don't count on it being gone.

    • maureen28sk
      maureen28sk EileenH

      Posted

      Eileen, that is putting things very realistically.  Good questions to ask oneself!  Real common sense.  Thank you.
  • Lee-Colorado
    Lee-Colorado maureen28sk

    Posted

    Eileen, Thank you again, when I relapsed in May, I had dropped to 12.5mg about two weeks earlier. I attended a convention in Keystone (~11000 ft) 4 days and then flew to Georgia. I didn't listen to my body and I had not been told go back to a higher dose if things started getting worse. There were also several times I should have just stayed in my suite but.... Listen to your body. I am now sitting at 25mg. I will be taking a few 12 hour flights so:

    I have enough pred that I can goto 30mg for the whole trip.

    my friend and I have discussed the fact that I might not take a few side tours.

    I carry the pills with me and not in checked baggage.

    Most international flights,have a few bulkhead seats that are reserved for people with problems. Talk to the people in Checkin...coming back from OZ these seats allowed me a modicum of comfort.

    Remember the purpose of you trip. If it is to see friends and tour NZ, don't waste your energy or risk your health by extending the trip by making the trip longer.

     

  • Lee-Colorado
    Lee-Colorado maureen28sk

    Posted

    Read the post on this site that explains that you must inform your insurance carrier of this pre-existing condition. If worse come to worse, you do not want to not be able to pay the medical bills.
  • lesley234
    lesley234 maureen28sk

    Posted

    I have just returned from a two week holiday in Canada and having read some of the posts now realise why I feel so 'wiped out'. Undertaking fairly strenous walks most days followed by not taking into account the time difference means that my pred dosage must have been way off course. Hoping to go to Jamaica in October to visit relatives so will be wiser next time
  • jan98472
    jan98472 maureen28sk

    Posted

    I was actually diagnosed with PMR hilst on holiday in NZ earlier this year. I had been admitted into hospital as I couldn't get out of bed without help etc. They first of all queried parethyroidism ( which is still being tested for ) but then came up with PMR. The transfomation after the steroid was nothing short of miraculous. We stayed for a further 2 months and flew hom early May. We stopped in Dubai for a few days as we find it helps the jet lag if we have a stopover. My PMR was not affected at all. Just make sure you take your tablets at the right time.

    However by February you dose should be quite low. I started on 40mg, dropping by  2.5 a week until I reached 10mg and am now gouing down 1mg a week.

    We have family in NZ so go every year for 3 - 4 months. We have our own Motor home so travel round as well. It is a beautiful country and well worth visiting.

    • EileenH
      EileenH jan98472

      Posted

      Just a warning: you have done very well so far. That does not mean it will continue that way I'm afraid. Down to 10mg is not too bad - but flares can happen as you approach the "maintenance dose" that is the lowest dose that will control the symptoms. The pred has changed nothing about the underlying autoimmune disorder that leads to the symptoms and as long as that is active you will need pred. 

      You cannot predict anything with PMR - some people will have a simple and smooth progression and be off pred in a couple of years. I have had PMR for 10 years, 5 of them on pred and am just about at 4mg. At no time could I have reduced at a rate of 1mg a week. Some people are able to reduce to zero quickly as you have done and then experience a relapse at low doses or even after getting to zero. We are all different and only as you travel the road will you know how it affects you. Some can walk only short distances even though on an adequate dose of pred whilst others claim to walk 6 or 7 miles at a go with no problems. No rules apply in PMR I'm afraid!

  • burt34192
    burt34192 maureen28sk

    Posted

    I am interested in the responses. I am a retired GP with new onset PMR. I  have been on delayed release prednisone (Rayos) 10 mg for about 2 weeks. Although I have seen and rx'd PMR in my past, I am now the patient. 

    I have already been fairly stabilized, but physical activity and time of medications (5 mg 5 pm , 5 mg 9 pm) seem to have an impact on how I feel during the day. I will be flying to UK (14 hrs flight time with 8 hr time differential) in a few weeks. 

    Any suggestions about dosing times, etc?

    • EileenH
      EileenH burt34192

      Posted

      If you are on Rayos you should be taking the entire dose at 10pm, within 3 hours of a meal or, alteratively, with a slice of bread and ham/cheese or similar. Not my opinion - the opinion of the manufacturers based on the testing they did and the reason the Rayos formulation was developed. The optimum time to take plain pred for best relief of morning stiffness is 2am - who wants to get up then? So they developed Rayos - taken before bed, releases at 2am, fully active at 4 am. No morning stiffness. It requires specific gut conditions to get the 4-hour release.

      I've just flown from Europe to China (Beijing) while on Rayos (Lodotra to me) and I just took the normal dose the night we left and the normal dose the next night (short night, normal day) at China time and have had not a single problem despite a heavy tour load. Going the other way I may take a slightly higher dose before that long night to keep me going until bedtime the next day. Or I may not...

  • burt34192
    burt34192 maureen28sk

    Posted

    Thank you, Maureen, for the excellent suggestion and information! I initially started on the 10 pm dosage as you noted was recomme, but was having some problems with the mineralocorticoid effect of prednisone (ADH suppression) causing nocturnal diruresis, and found the split dosage seemed to have eliminated it.

    However, I plan to go back on the 10 mg hs dosage since it will be much easier to schedule taking the med. Now that I am generally feeling better, it is encouraging that you have found the time zone changes to be able to be controlled. So, on the West to East I will certainly try your suggestion, and then also on the East to West schedule.

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