On a plateau at 5mg

[Deemar]

I was diagnosed with PMR in June 2014. I know, from visiting this forum, that I have been luckier than most in as much as I don't seem to have had as much pain as many of you.

I was down to 6mg in May and finding pain and tiredness difficult to cope with. I was thinking of asking to up the dose when, Hallelujah, I woke up and felt so much better. It really was such an obvious improvement overnight it felt like a miracle!

I reduced to 5mg on the slow reduction programme and have been on 5mg since the second of August.

I am still far from pain free but most of the pain is in my right leg and right arm, not bilateral, which has always been the case. Tiredness usually overcomes me mid afternoon and I have organised my life, being retired, to take it easy in the afternoons. Days out need to be rationed and I have an easy day afterwards. So all in all I manage the problem well, I think.

We are going to New Zealand next month for just over four months. I spoke to my GP about this, he is far better than my rheumy!, and he suggested reducing slowly to 4 mg if all well when we get there. I am wondering whether I should stay on 5mg until,we return as life is going to be a bit busier whilst we are there.

Your thoughts would be appreciated.

[DorsetLady PMRGCAuk volunteer]

Hi Deemar,

So envious of you going to NZ this winter, but I am going back next year for my daughter's 50th birthday.

I would suggest you stay at 5mg whilst you're there, as you say likely to be doing more, plus what's the point of risking any problems occurring. I was on 6mg when I was out there in 2014/2015 admittedly only for six weeks and had absolutely no problem.

If you are still getting pain, maybe 5mg is not quite enough, so keep your problems monitored, and don't let them get any worse. Even an increase of 0.5mg may be enough.

Not sure if you've done the trip before, or which way you are going. I went via Singapore, with a day's stopover on way out. Whatever, just think about your tablets, I ended up taking an extra dose on the way out. I worked out timings so I took dose before I left home flight usual time, and the additional dose Singapore am, and then another dose with breakfast on plane just before landing in NZ. Coming home was fine - morning dose before leaving NZ, nothing in Singapore (although did have some if needed) and then back to morning again with breakfast before landing LHR.

Of course if you're going via US you'll need to reverse!

Take extra tablets in case you need them, plus a week or so supply in hand luggage (just in case anything goes awry). I copied my prescription to show at customs - no problem. Get assistance at airport (LHR is a 20minute walk) including your stopover one, sometimes it's a different terminal!

You probably will be shattered the first couple of days there, so don't let anybody organise anything too quickly.

Most of all, enjoy!

[Deemar in reply to DorsetLady]

Thank you for your reply. I was leaning to staying on 5mg so will do so. Yes we have been before and love the place and will certainly enjoy.

We are going via Dubai, with a 19 hour stopover in the terminal hotel so should get a good rest there. Then to Perth, to stay with friends for six days before the final leg to Auckland so that should make the journey easier.

We fly from Gatwick so will find out how long the walk is there. I have never asked for assistance before but after your advice do wonder if I should do so. Are there any criteria for doing so? Doctors letters or such?

[DorsetLady PMRGCAuk volunteer in reply to Deemar]

No, just contact the airline in advance, or when you book (but guess you already have). Then when you get to airport look for the Special Assistance desk - just give your name and flight number, and they'll advise you the meeting point. You can leave until you get to airport, but I prefer to do it beforehand.

Your details should be passed on to stewards on plane, but just check during flight because pilot has to ask the arriving airport.

I've always found them very helpful. No cost, but I always give a tip.

[Deemar in reply to DorsetLady]

Thanks for that. Who do you,tip? One concern is what about my other half? Is he allowed to be with me or am I whisked off leaving him behind.

[PMRpro Ambassador in reply to Deemar]

Your other half tags along with you - gets all the benefits except the wheelchair (shortcuts and lifts)! I found the security and customs people were far friendlier than usual (and that was in the USA!). It is magic if you have a connection! We had one where we "only" had 3 3/4 hours but it included doing immigration in to the USA before flying out for Canada. We were a bit worried and were regretting not having flown a day earlier. In the event we were deposited at the gate for the Canadian flight with 1 1/2 hours to spare! So we walked back to the nearest bar...

We tipped the person pushing the chair - all airports are a bit different and in some places it is AIRPORT staff, in others it may be AIRLINE staff. Whatever - they are being paid. Our chair-pushers varied a bit - one was pathetic and barely polite and didn't get a tip! The German girl was gone before we had time to give her anything. I understand Heathrow is hopeless but don't know from personal experience.

DL says to contact the airline. I did mine via the travel agents who booked the tickets for us (unless you did it online).

[Deemar in reply to PMRpro]

Yes, I can do it on the manage my booking bit on the airline. Thanks for all the info. I'll go for it.

[DorsetLady PMRGCAuk volunteer in reply to Deemar]

Hi again. If a wheelchair used then tip the pusher! At Heathrow they use a golf type buggy which holds about 6 people - including spouse, so I don't tip.

Whichever way, both you and spouse get whisked through (although I'm on own) so you do get chance for restful coffee.. or whatever whilst rest of passengers are trudging along concourse!

Plus you're normally loaded first, so no pushing and shoving trying to find seat! And although you're off last, you still get to the baggage reclaim in plenty of time.

Being a little infirm does have some pluses at times, but a lot.. but some!

[PMRpro Ambassador]

I see the lady with the NZ t-shirt has already answered - and I agree wholeheartedly with everything she says. Well, nearly: I would not put ANY medication in the booked luggage. None at all. It is in my hand luggage - and sometimes I split it between my hand luggage and his...

Now you are at 5mg and below your body has to start making its own cortisol - and you will find that a long haul plane trip will take it out of you. It does whether you are on pred or not. As DL says - the first couple of days you will very likely feel like sleeping 24/7 - so no parties to be planned. And airport assistance - Heathrow is awful I gather but at least that is at the start!

One of the top PMR/GCA rheumies I know likes to keep his patients on 5mg for up to 9 months - he finds it helps the onward reduction go smoothly. I think sticking there for 5 months is a perfectly fair concept. There is no hurry, it isn't a race and finding a doctor who can deal with a flare when you are away from home is not easy - I speak from experience there!

[Deemar in reply to PMRpro]

Thank you for your reply. Don't worry no parties planned! Once we are there we shall be leading a relatively quiet existence and I shall stay on five and take all meds in hand luggage!

[RSBREON]

If your headed for a vacation & your doing well on 5mg stay there untill you get home. Enjoy yourself. My Rheumy said she would feel good if I got to 5mg. On 7mg now. Good Luck!

[Deemar in reply to RSBREON]

Thankyou

[Deemar]

Just an update! Been in NZ since 30/11/2016. Stil on 5mg and all good. Staying on 5 has been the right thing to do I am sure. Special assistance on the journey was well worthwhile, I am sure it helped as a lot of walking and queuing was involved. Would never hesitate to ask for it again. Will keep on 5 until back home and recovered from the journey then will see my rheumy and go from there.