To up or not to up ?

[jules1955]

Hi all, well I am still on 7mg, still hip an back pain and for the last couple of weeks have been so tired ( and fed up) I am going to visit my daughter in China in a couple of weeks and to be honest I’m not sure I’m looking forward to it. I’m worried I won’t be able to cope with the sightseeing etc. Just thinking about upping the Pred for the trip, I’m away for ten days, then reducing again when I get back. Answers on a postcard please ❤️

[SnazzyD]

Though I’m not a fan of upping for convenience instead of tailoring life to suit, sometimes needs must. If it were me I would do that for this trip especially as 7mg is getting into the zone where you may not be flooded with Pred any more but the adrenal axis is still looking the other way. If nothing else it can really affect mood so perhaps a mg or two might be better. I don’t know your situation but If it were me I’d probably go to 10 from the day before the journey to a day or two after. I would urge you not to thrash yourself to get round all the sightseeing and not put a brave face on it. On all my holidays I’ve allowed myself the morning to gad about and the afternoon is restful activities only. Have you spoken to your doctor? The experts will be along, probably with better dosing advice.

[EdithWales]

I am sorry to hear that. Traveling is always stressful and you certainly shouldn’t be struggling. Talk to your doctor about increasing the dose.

You want to be able to enjoy your holiday and you won’t be able to do that if you are not fit.

[Oxford8 in reply to EdithWales]

Another Ambassador! Thank you Edith Wales. 🌷

[EdithWales in reply to Oxford8]

Thank you Oxford ( I trained at the Radcliffe)

I remember falling on this Forum five years ago very ill and desperately frightened I would go blind from GCA.

The help, sound advice and support I received from PMRPRO,Dorset Lady and others saved me. I am surrounded by medical support but they were nothing compared from what I found here.

We have a Forum that is precious and although there is room for humour I believe that the primary purpose is about is about the management of our disease.

Take care

[Purple-Owl in reply to EdithWales]

I trained across the road from you, at St Anne's college where I got my MA. It's in English though, so what I look for here is what I lack, a working knowledge of the biology of those twin dragons PMR and GCA. My mother lost her eyesight with GCA and I have PMR so I need that knowledge. This site has been a godsend. I've learned so much here. Many many thanks to all!!

[EdithWales in reply to Purple-Owl]

Clever girl. Those were happy days and I am meeting up with my set, 16 of us left from all over the world. It’s 60 years since we started. Like you the knowledge from the site has been invaluable and has been passed on to my husband and his Partners. Few GPs have too much knowledge of our complex dragons.

I hope you have a good day

[Telian in reply to EdithWales]

So you're the missing link! My sources said there was a third - well done and hope you enjoy your new challenge!

[EdithWales in reply to Telian]

Thank you Telian

I always enjoy your posts that are always helpful and supportive.

I hope to ensure out precious Forum continues to provide the best information based on evidence and experience.

Take care

🥂🥂

[alvertta]

I have GCA. was due to reduce just prior to a two weeks vacation involving 5 hour flights. My doctor said no. Stay on the same dose til you come home. Worked for me. I would ask your doctor. And enjoy your trip and family time.

[Hidden]

I think a trip to see your GP like EdithWales suggests would be my first port of call, reductions before you go on holiday or while you are away are not a good idea, especially if you’re not that great at the moment.

7mg is where a lot of us struggle as that the Physiological Dose & not always enough to hold PMR at bay.

Have a Lovely Time

MrsN

[Purplecrow]

if it were me, looking to a wonderful trip with family, I would Abandon the taper topic, and settle into a 10 mg dose for the duration of the trip. I also agree with SnazzyD about planning each day to allow for a rest in the afternoon. That will allow you to enjoy evening activities also.If you havent discussed your PMR with family, it would be good to do that. Letting them know about your needs allows them to help you stay in touch with your need to take breaks.

Otherwise, enjoy your wonderful trip

[PMRpro Ambassador]

I would without hesitation. You can drop right back to where you were after only 10 days at the higher dose. Where are you going?

I "did" China a few years ago and while I can't remember what dose I was on then I did increase it slightly before travelling. We were going to a scientific conference and added on a tour which meant flying to Beijing, bus and train for the tour, a few nights on the Yangtse and ending up in Shanghai before then going to the meeting so I had to be on the go every day. It was fine and I amazed myself at what I managed - had I known in advance I'd have chickened out I think! But if you are with your daughter it will be different.

I was offered a wheelchair to get up to the Warriors as it was hot and slightly uphill but declined - I was fine. I walked all round the summer palace and Forbidden City in Beijing on separate days and although I was knackered in the evening it all went OK. Don't hesitate to use the disabled toilets if available (such as they are!) and ask if you can't see one. Take any opportunity to sit down and always have water with you.

Have a wonderful time - I did.

[jules1955]

Thank you for all your replies, I think it’s what I wanted to hear ❤️ I will up the dose for the Holiday, it will be such a shame to feel crap while I’m there, I will be in Beijing for 4 days doing site seeing and then taking the bullit train to Xi’an where my Daughter lives ( and Terracotta warriors ) will let you know how I get on. 🇨🇳

[PMRpro Ambassador in reply to jules1955]

Have you been before? I liked X-ian. I liked China - would go again!

[jules1955 in reply to PMRpro]

First time ! My Daughter has lived there for over 5 years now.

[PMRpro Ambassador in reply to jules1955]

Wish my two would go somewhere interesting!!!!

[jules1955 in reply to PMRpro]

My Son is in Costa Rica at the moment, maybe I’ll go for a surf later in the year 🏄‍♀️ 😂

[DorsetLady PMRGCAuk volunteer]

Agree a couple of weeks won’t do any harm -and if it’s just a one-off thing - fair enough.

Mostly importantly - enjoy your holiday.

[jules1955 in reply to DorsetLady]

Thank you x

[Marilyn1959]

Think most of us up pred while away to give us the most out of our holiday. Listen to your body in terms of activity and rest. Have a great time.

[SheffieldJane]

It sounds like you are not on enough to control your symptoms anyway jules1955. I can empathise with your trepidation. I feel the same about being up to Australia,in just over a week.

China sounds so exciting! You need to explain to your daughter that you are not as energetic as you would like to be. I hope that you are pleasantly surprised. These changes do us a world of good. Nordic walking poles helped me so much when we went to a Greek Island with accommodation at the top of a rocky cliff path.

[nuigini]

Definitely up the prednisone and enjoy visiting your daughter and China. We had a week in China a few years ago and it's amazing! It wasn't on my bucket list, but I'm sure glad my husband and I had the experience.

[CT-5012]

I always get airport assistance it makes a huge difference. If you feel a bit embarrassed because you feel that you don’t look ill then LIMP. Have a fabulous time.

[Visby]

Have a grand time sounds fabulous would love to see the Terracotta Army

[Telian]

As others have said to reduce before a holiday isn't a good idea - take extra if you wish as you can come straight back down once your back. Speak to your GP if you're unsure.

Have a wonderful holiday.