Changing Rheumatologist and pressure changes during a flight.

[englishrose417]

I saw my Nurse Practitioner and told her that my Rheumatologist wanted me to decrease my prednisone from 20mgms down by 5mgms a week to 5mgms then stop. I am also on 15mgms MTX. He did not want to know about NSDS it was to be his way.; I tried to find out how many patients with GCA/PMR he sees and he said he may see 1 a month or so. My NP is reducing me down by 2.5mgms eg. 20mgms alternate days and 17.5mgms the odd days over 2 weeks In the meantime she is going to refer me to a new Rheumatologist which can take 6 - 8 weeks here. I will go with her reduction which she says she has got 2 patients off pred. but 2 are struggling so I will try her version. I have a travel question in 6 weeks I am going home to the UK and I am wondering if anyone has had problems with the pressure change during the flight, and was it necessary to increase prednisone prior to flying. I look forward to any comments

[DorsetLady PMRGCAuk volunteer]

Hi englishrose417,

I flew long haul - UK to NZ when I was on 7mg. No problems whatsoever, but you may need to think about the changes in timings to ensure you take enough Pred over the 24hr period covering travel - won't matter if you take slightly more, but ensure you don't miss a dose, or take less than normal.

Take extra with you (take all medication and copy of prescription in hand luggage) in case you feel you need to up by the odd mg or two. Travelling is always stressful, even in the best of times - fact of life. ( just been to Spain on holiday and both outward and return flights were delayed!)

Request Special Assistance at both airports, makes life much less stressful! Plus you whizz through booking-in and passport control.

Make sure you rest the following day after travel - but most of all enjoy!

[englishrose417 in reply to DorsetLady]

Thanks for the advice and as usual you cover all information needed

to answer my questions.

[CT-5012 in reply to englishrose417]

Hi English rose 417,

I too did a long haul (Eng Aus) while on 20mg of Pres with no problems, aisle seat, tired for a couple of days. Agree with all that Dorset Lady says. Have a good flight.

[Wbednell in reply to DorsetLady]

Hi I have had GCA for 13 years I have got off prednisolone 4 tlmes I have seen 4 good consultant s each one has started me on 60 mg dropping 5 a month down to 20 then by 1 down to 2 then drop 1 every month to finish doing this I didn't get much pain only got really pissed off after it came back after a few months so check with your doc on your dosage

and good luck on getting better Bill

[DorsetLady PMRGCAuk volunteer in reply to Wbednell]

Hi Bill,

If you keep getting a recurrence of GCA, then I would suggest your consultants aren't that good! Either that, or you're very unlucky, most people once they have been treated for GCA don't seem to get a reoccurrence.

I would suggest that each time you're on the Pred it is not getting control of the inflammation sufficiently, so that once you come off the drug the GCA is still active (even though you're not in pain) so a few months later it surfaces again. As a matter of interest what are your symptoms each time?

[Wbednell in reply to DorsetLady]

Pain in my shoulder neck jaw ear headache lose weight eye ache general y feeling knackered I know I unlucky but I haven't gone blind so I just keep going by the way my consultant s have all been good 3 in the UK 1 in France so all could not be wrong it just happens

[DorsetLady PMRGCAuk volunteer in reply to Wbednell]

Yes I guess you are unlucky, and obviously you know enough about it to get treatment in good time whenever it occurs, but personally I think I'd want a bit more investigation done as to why it reoccurs.

I lost sight in right eye over a matter of 4 days (albeit after 18months of undiagnosed symptoms) so I'm always anxious about others, but if you're happy with situation then so be it.

[PMRpro Ambassador]

I have no problem flying - short or long haul. If the "day" is going to be short (coming to Europe from the USA) I take my normal dose. If it is the long way (Europe to the USA) I either take proportionally more at my usual time before travelling or take a booster before the 24 hours is up. And now I request airport assistance - so much better sitting in a wheelchair while waiting to go through security and immigration And if you have a connection - they can do the rushing

[SheffieldJane]

I am glad your NP seems to have some sense re reduction of Pred. After 10 mgs I really would urge the dead slow method. I am down to 7mgs and have had enough symptoms to know that I couldn't have done it any other way.

I have done England to Australia and back again without too much bother, PMR likes resting. But I think the jet lag lasted longer. It's good to twirl the ankles and get up for little walks too, plenty of water - the usual. DorseLady and PMRpro have said it all really. Have a great trip!

[pollyg263]

no problems with air pressure. going from uk to usa. I just had to stick to the hours /24.of taking my pred. by adding a couple of mg in between to adjust to the time of taking it at 8am when I got there. dropping of 5mg per week seems rather drastic to me tho, what about the withdrawel symptons.