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PMRGCAuk
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Life post GCA - Mark 2

For those of you still on your journey, just a reminder there is life after GCA, and dashed good it can be! My previous sojourn to the Antipodes was during GCA and good, but this time was even better.

Current journey back from NZ to UK -

Left NZ 12.00 noon Wednesday 21st - sorry to say goodbye to country (you must put it on your bucket list, long way but really worth it) and daughter & family- especially SIL who coped very well with rude comments regarding farming, Wales and rugby (not necessarily in that order)!

Plied with champagne, white burgundy and delicious lunch (as already changed watch on Singapore time so theoretically at 0900am!) Followed by latest version of Death on the Orient Express.

Now sitting in Singapore lounge (local time 6.30pm) head still on NZ time so 11.30pm, so brain frazzled. Have another another few hours to kill before next flight, so methinks duty free calls. ETA Heathrow 5.55am Thursday 22nd - deep joy! Heaven knows what brain will be like by then!

Where am I, what time is it, who am I?

No change to normal then.

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Cant be bad, plied with champagne and all - lucky you. Have a good flight home

Bridget

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Well someone’s got to do it!

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Glad you tried it out for me. Good you took one for the team.

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Yep that’s me! All heart❤️😏

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We will welcome you home with open arms!!!!!!

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Bean there, seen it, got the tee shirt :-) Would love to go back some time, but what a journey :-(

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Hi DL

You will probably be exhausted for a few days but everyone will be delighted you had such a wonderful and well-deserved holiday in NZ. Thanks for not forgetting about 'us' here on the forum while you must have had so many more attractive distractions - and a safe rest of your trip home

Best wishes

Rimmy

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Cannot but admire you going on such a long journey. Latest flare up I have had made the car park at Tescos seem daunting. But I am hanging on.

Would very much like your advice on how to reduce the steroid dose. After a fall last July (knocked out right sacroiliac-iliac joint) dose put up and having difficulty reducing. is 0.5mg per couple of weeks Ok, rather than greater steps?

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I well remember the early days - and what a struggle it was, but you get to where I am one day ( maybe not Singapore, but you know what I mean)

Yes, little steps much better - good luck!

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Can't wait!

Welcome home.

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Recognise the daunting skow walk i did down tne street pre diagnosis...i was practically crawling and saw my car which I believed was parked 100feet from my house. I climbed in and slept for half an hour with my dog wondering what was happening. I Woke up and I was 10feet from the front door. 😂 I just didn't think I would make it one step further.

I am trying the drop from 10mg using dsns method having tried 0.5mg drops over 3 weeks and having to bounce up. I would stay at the 0.5mg for as long as possible as it can take 3 weeks for my symptoms to flare again.🖒

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I'd say ideal - bigger isn't better when it comes to reductions...

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Thank you. What I have found is that my talent for embroidery can be used as I sit down and help other people who have not been able to finish the background, difficult pattern or whatever. No charge, just postage costs, and a donation towards helping Scottish Red Squirrel project, which is going well. so if you have any of those unfinished items lurking in a drawer.....................

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Safe travel and looking forward to seeing a few pics!

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I love Singapore airport!

Thanks for the positive message and welcome back! Just in time for apple blossom, frisking lambs and daffodils in Dorset I guess.

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Hope so. Just left ex tropical cyclone Gita behind - 5 inches of rain in 24hrs, but think we got off lightly compared to some!

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I am planning a big trip in September. I am so pleased you have posted your travel experience on long haul flights and your condition. Parker is a bit perturbed about my fitness levels. He will be reinstated to full Parker mode for the journey.

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First -request Special Assistance. Second -enjoy! Third - Parker can take back seat and do the organising!

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Thank you Dorset Lady,

I seem to to be at my lowest point at the moment. I need to hear positive thoughts. My grandson graduates from high school in June and wondering if I’ll be able to make the trip and connecting air flights on my own. Mention to my son that I would need wheelchair assistance. His response “ you don’t need that!” Well, the legs are very weak at the moment and why doesn’t anyone get this disease! I’ve read your journey and thank you for the positive thoughts that there is maybe a end to this. maryanne

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Hi

Politely(!) tell your son to mind his own business! Yes you do need SA - I get it post GCA for my arthritis- it’s a godsend. Most large airports have much too far to walk!

And yes of course you can do it on your own! With a little help! Think positive - and go for it!

Last time I did it, 3 years ago it really boosted my confidence.

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Thank you!

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I am not in a wheelchair but have mobility issues and fatigue. It is so much easier and less stressful to use the SA service. Some airports are enormous. Getting to baggage collection at Tenerife is a long walk. Manchester Heathrow and Gatwick are scary. Costs nowt book it in.

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I would agree, book the wheelchair assistance for sure. I had it on two flights back from the States, with Delta Airlines, who couldnt have been more helpful. They were there at the plane door to meet me and at Heathrow took me to meet the taxi in the car park. I felt a bit of a fraud, as I thought I could possibly have walked but as you say such a long long walk in these airports and as I was being wheeled along I realised this!

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I have been told it is provided by the airport - not the airline. Heathrow doesn't have a good reputation though it is said!

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Oh I am sure you are right, but whoever arranged it, it happened at Hartford, Detroit, and Heathrow, and I thought it was through the airline but I may well be wrong, I definitely had PMR brain etc at that stage!!

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See below!

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You’re right it is the airport staff, but you should/can book through airline initially. Then either confirm with them when you book in or the SA desk in airport. And you’re right Heathrow is a disgrace compared to other airports! Stroppy staff whereas other countries much more friendly helpful etc!

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Response to son: "How do you know? Have you had PMR? No, I thought not..."

Each little bit in an airport is generally not a problem. It is the fact they are all added together, you have no idea how long you may have to queue for security and immigration if it applies and all too often there is a deadline to meet so you can't suddenly say you have to sit down and rest.

I can walk at my own pace around a town for a couple of hours, with the option of a cafe for a break. I don't do that when travelling - I let someone else take the strain.

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I do believe some sons are in denial regarding sickness of their mother! They are so used to us being their Super Hero! Where’s Freud when we need him? My oldest son gets it, my youngest thinks I need an attitude adjustment when I blame my swearing and edginess on Prednisone. He thinks my personality is no different than Pre PMR. Maybe he is right.

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Your right Sandy! And yes he’s my youngest also. Always been their super mom. 😁

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Good for you! It’s so nice to hear the “after” stories as it gives us all hope that there is life after GCA & PMR. My husband and I have NZ on our radar for next summer. We were supposed to go this year but I decided to give myself another year of recovery so we will do Northern Maine for a few weeks this summer which is such a beautiful place.

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Yes it is, but it has been a very cold winter! we are having 60 degree today and it’s going to be a wonderful break from sub zero weather! Enjoy Maine when you get here especially the coast.

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Thank u. We have a place on the bay in Milbridge.

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Welcome home Dorset Lady,so pleased that you have had such a lovely time.l hope the rest of your journey home goes well.lt is very cold here but spring is not too far away xx

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On Sin/London leg as I type!

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Carry on!!! what a great post. And what an inspiration you are to all of us. Champagne and great memories. Always wonderful to go away and always wonderful to be home!

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How wonderful Dorset Lady! So encouraging to hear about your journey and that there is fun to be had after all you’ve been through. Truly inspiring!👏👏

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Welcome home Dorset Lady, you have certainly been in a “journey’” now you will need much rest I am sure. Take Care.

Kate

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Hope rest of journey goes ok

When i first joined site you had just returned from New Zealand how fast the years go by hope you get to go back soon

But for now settle back to life in Dorset

it will be nice to be home

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Welcome home. Glad you had a great time. I think Paris will be as far as we get this year. New grandson! May.

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Paris is nice- new grandson better!

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Brilliant story! Hope to do it the other way (NZ to UK) next year. Will be sure to include the champagne part. So encouraging to hear what is possible.

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Welcome back. How do you know when to take the prednisolone when travelling with the time changes. We are off to Sydney in June and have booked special assistance for us both (hubby has arthritis). Thanks

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Just returned from Far East. I decided to take meds at same time. I.e. If you normally take them at 9 am in Uk then take at 5pm/6pm local time in Oz. It seemed to work out ok for me. In fact the warm climate really helped my PMR symptoms.

Enjoy your trip

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Not on Pred anymore, but when I was I took usual morning dose on day leaving UK, another dose sort of half way through and then got back into usual morning time at destination. Means you take 3 doses rather than 2 within the 24 hour period - but a little extra won’t do any harm - in fact you may need it. Just do a bit more planning pre trip and it will be fine.

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Wthanks for that

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Welcome home Dorset lady

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Good to hear you’ve had such a lovely time! Although it must be so hard to say goodbye... hope my kids never more that far away from me.. But, what about Hobbiton? Would be my first destination in NZ! Have you been? Thank you so much for staying with us, inspiring us, reminding us there will be a day... Safe journey 👩🏻‍✈️✈️

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No we didn’t, but it’s supposed to be very impressive. Hope you make it

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Welcome home, dear Dorset Lady. Fantastic holiday, good health, sunshine, family.....my idea of a perfect holiday.

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Welcome home, Dorset Lady! Hope any jetlag flies right out the door!

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Hi your comments make me feel good felt a bit down today until I read your post as I am always worried to what I will be like after GCA am now on 6 mg according to rheu I should have dropped to 5mg tomorrow but i will go to 5.5 Thank again and safe journey

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Welcome home Dorset Lady - so uplifting to hear your story and to know you got through this and out the other end enjoying life. I can’t wait to get off the Preds too!

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You will!

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Welcome back DL - hope you cope well with re-climatising to our loverly weather

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Only got in a 6am this morning, just unpacked (well nearly!) trying to potter gently today so I stay awake until evening!

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Well done you, unpacking I mean - be surprised if you make it to evening without a teeny nap!

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Knocking on 5pm and still awake! Think dinner might be the killer though.

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Wow - think you might be right - if I don't hear from you further today will assume you've succumbed! Night night...

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You are an inspiration to all of us! Thanks

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Hope you arrived home safely. I was diagnosed in Sept and have PMR AND GCA and i am currently in Melbourne. We leave for Sydney on Saturday to join a cruise home to the UK. I am reducing preds slowly from 60mg currently on 12mg. I have been here since begining of Dec and get home end of April. I have been very lucky with reducing and not had flare ups I will carry on reducing by .5mg every 3 to 4 weeks. The only problems I seem to have are that my legs dont want to work very well and weight and blood pressure increase otherwise all good.My rhuemy wants me down to 10mg on my next appt..

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Yes thanks, have a good trip home. What the Rheumy wants and what he gets isn’t necessarily the same thing, so do things as you feel fit.

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Suspect you're asleep but welcome home.

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Trying hard to stay awake and get back into UK times!

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That’s what I like to hear. Just back from South Africa and did my best. Oysters for breakfast everyday and overdosed in the Winelands

Before I went away I had a flare and listened to Rheumatologist who put me up to 40 then reducing weekly to 15 He then said go to 10. Against all my best instincts I did what doctor said, went to 10 and suffered pains in legs and buttocks. Husband says it was a build up of lactic acid caused by swimming! Why do I listened to these men? CRP 11, still aching so he has put me back to 15. I told him about your 5 years and said I would very slowly taper which he thought was a good idea! Keen to get me off, as I am but I am not having the so called sparers. Also said I now have PMR as it’s interlinked with GCA

All such fun

Really glad to have you back 🥂🥂

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Yes it was a slow taper compared to many - but at least I didn’t have any flares!

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Glad to hear you're safely back, however, from the amount of posts from you we would never have known thay you'd gone!

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I think it was particularly pleasant for those of us in a time zone marginally more compatible with DorsetLady's schedule. :D

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You are an inspiration to everyone - GCA, some sight loss like me, but always upbeat and cheerful!

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Hope you had wonderful time it certainly sounds that way hope by tomorrow you will know who you are !

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Well, one can always live in hope I suppose 😏 - stranger things have happened!

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Come back soon.

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Lovely to read your positive post! And so glad you had an even better visit this time! 😊X

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How to be confused without really trying.

So glad the trip went well. It is such a beautiful country.

You give me hope that someday there will be an end to this ' thing ' as I call it.

I will be returning to the UK long haul on March 24th/25th learning how to manage my Pred on the journey. With such good advice from yourself and others I feel quite grown up about the journey home. Bon Voyage

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Good luck with return journey. Feel surprisingly “with it” this morning (Fri) after a good night’s sleep. Hope I haven’t spoken too soon! 🤦🏻‍♀️

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