Prednisolone just in case?

Hi, I am going to Hydra ( Greek Island) for a week. It is rocky with cliffs and has no vehicles. What sounded idyllic a few months back now seems like a potential nightmare. Thanks to PMRpro I have invested in walking poles. My question is about Prednisolone. I currently hover around 14.5mgs but I am able to manage my condition carefully with lots of rest etc. I am not without symptoms at this dose but I am coping, just. Is it legitimate to anticipate additional physical stress and up the dose a bit? I haven't really felt good since, my starting dose of 20mgs ( the honeymoon period). I had 2 days in London, taking it easy, but could hardly get out of the taxi at the end and felt a bit desperate at points. Can Prednisolone be used this way? To compensate for unavoidable exertion ( the flight, the ferry, the climbing). Can anyone suggest what I could do to head off trouble. I don't want to end up being airlifted to Athens aargh!

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  • Hiya,

    Sounds as if 14.5mg is not quite enough for you at home anyway without adding the additional activity you're likely to be doing on holiday, so for two reasons it might be wise to increase your dose.

    How much by, it's obviously up to you, but I would have thought at least a couple of mgs, maybe upto 17.5! It might be a bit of trial and error, obviously enough for you to enjoy your holiday (you still need to be mindful of rests etc) but not too much so that you cannot come back down again afterwards.

    Sorry to be a bit wishy-washy in reply, but think the answer is - increase, the difficult question is by how much - and only you can judge that on the day really!

    Just don't be too ambitious, and if you need a days rest - then have I one! Most of all - enjoy 👟👒🌞😎

  • Although increasing the dose MAY help you manage better there is no guarantee. It certainly does nothing about the fatigue - that is part of the autoimmune disorder which the pred doesn't touch, it chugs along in the background.

    I was going to ask a stupid question: if there are no vehicles, how do you get from the airport to the accommodation? But I have just googled Hydra. You will arrive by ferry I presume? Am I correct in assuming all the accommodation is in the town so walking distance from the port? Do you know where yours is? High up? Low down?

    All I can suggest is that for the flight you request airport assistance - that makes a big difference to that part and will leave you with some energy for the ferry and getting to the hotel. You will be taken through security to the boarding gate - possibly just with an electric buggy but I was taken with a wheelchair - not even climbing on and off the buggy to cope with! At the destination you are collected at the exit of the plane and deposited at the departure point for your onward journey. At airports that you KNOW are VERY small you can decline - but I'd always thought Munich was pretty small - it wasn't!

    We have a campervan and don't use bikes - I know I can manage a couple of hours walk on the flat and gentle slopes but steep hills pose quite a problem for both of us so we are very choosy about our campsites. I have to say - I really don't think that at whatever dose I could cope with a week of up and down in Hydra if my hotel was at the top of the slope!

    Have you seen this

    telegraph.co.uk/travel/dest...

    but having studied the pictures on dear old Wiki, maybe you will enjoy doing it how this traveller did - I would!

    cntraveller.com/recommended...

    If your friends are walking across to beaches - maybe you could cheat and use water taxis to go and meet them and come back? That will avoid any risk of getting stuck halfway and the embarrassment of being rescued on a mule. Because there really isn't another option is there?

  • Thank you for the coaching and inspirational links. Considering the airport assistance, Athens Airport is a nightmare. Onward and upward or a cheap Taverna at the port!

  • As a PS - have you seen this site? I'm sure you have but nevertheless

    hydraislandgreece.com/

    cos I'm sure others will love to see where you are going!

  • Cor! Pics are breathtaking! Have been to Greece a long time ago, but could do with going there, TODAy, MINUS AILMENTS!!!!!!!!!!!!! hAVE A SUPER TIME!

  • I arrived home from my week in Mexico I was scheduled to drop to 17.5 but stayed at 20 mgs for the week. I am the one who went to fast got down to 7 mg then flared bad and had to go back to 20. I did not have any trouble but all my hiking around was flat ground. I always feel tired so I just accepted that and went from there.

    I took my weeks supply of meds with me and didn't think about humidity and pills disolving. It put me in a panic and then I put the pills inside the drawer and covered in clothes. I couldn't believe I was so stupid to not have back up meds. Our plane could have been grounded due to thunderstorms and I had doled them out for precisely what I needed.

    So, take backup meds. Plan your trips and rest when you can. I almost cancelled a few times but it ended up fine.

  • Thanks for the tip about the pills. That is just the kind of thing that throws me. So left field. Glad you made it. I remember your worries.

  • The trip Jane was easy physically but intense heat n humidity were not.

    I will admit my first ever 5* resort trip was not so 5*. Pools were shallow n extremely warm. Some pools were green for days. A muddy river emptied to the left of the resort making the ocean brown.. BUT I got to see my first frigate bird which was on my bucket list.. AND I never had a flare up of pain to land me in bed.. Wonder if the swim up bar where drinks were 2 for 1 made a difference. Also lived the evening thunder n lightning... Glad I went but never a resort again I am cabin by the lake or river kind of gal...

  • Me too - we camp (RV) but many of the European campsites are being turned into multiple star holiday villages. Yuk!!!!

    But my view today is definitely 5* - Lake Iseo in northern Italy. A few too many dogs but still relatively peaceful despite the people...

  • I have been to Hydra many years ago, I loved it. It was only a day trip on a ferry from Poros where we were staying.

    The ferries are a bit brutal as the guys just want to get everything off (including you) and get away again. I would make sure you get to the front on leaving the ferry to give yourself time to disembark.

    That said it is beautiful, I only saw the little Town area but it was very hilly maybe there is some arrangement you can make with the guys who own the donkeys to help with luggage. Perhaps you could "charter" a donkey for a day to see some of the Island? We had a Donkey trip in Lesbos through mountains (small ones) not the most comfortable trip, but lots of fun.

    I am sure you could spend a fair bit of time just sitting near the harbour and watching the world go by, it's very pretty.

    Lucky you,... enjoy.

  • Like Riversnan, I have only visited Hydra on a day trip. A most beautiful, idyllic island where the hills all around with their colourful houses seem to rise up out of the sea. As it came into view, there was an audible intake of breath from everyone on board. Knowing the terrain, I know that I personally could not have ventured far there during my PMR/GCA days, so take plenty of spare Pred along with you, and postpone any planned dose reductions until after your holiday. Have a lovely time - if you find you have to just resort to sitting and taking in the view, it couldn't be a prettier place in which to do so.

  • Reading all posts, I would not be visiting there at all with PMR. I would check out the medical facilities out there, as another flight to Athens sounds to me like there are none.

    But if you MUST go, take a whole heap of your meds with you and like Celtic says - just veg out and take in the view, sunshine and become a Precious Princess for a week.

  • Thank you everyone for applying your lovely thoughtful minds to this. Our accomodation is in a converted windmill on top of a cliff. Luggage is taken up by mules. People have to walk, a series of shallow steps with breaks I hope. My husband and adult son are coming ( celebrating son's graduation and qualification in teaching English as. Foreign language). My biggest fear is spoiling it for everyone. I've minimised the effects to my children and moaned my husband into a hole in the ground.

  • Continued. If I dropped out they might feel that they have to. I know that with will power and love I have continued looking after grandson Theo ( collapsing after but full of love hormones and happy memories). I am hoping that I can get up to the accomodation at least once and wave everyone off as they explore. The journey will be punishing, getting on and off boats dire. I seem to be able to plod along ( walking for an hour or more) ok. I suffer after though. Sitting on the terrace looking at an amazing view, sunsets etc. will do my soul good. I go on Saturday, clutching Prednisolone. Hoping they still love me when we get back. My poor husband's idea of empathy is developing pains of his own. Our poor son. Big Leonard Cohen fan though ( lived on Hydra with Marianne for 10 years). Thanks again - no more booking ordeals for the future for me.

  • Good luck - I wonder if one of those shooting stick-type walking sticks for someone else to carry for you might help on the way up those steps so you have somewhere to rest at intervals given that getting up after sitting on the ground is probably a no-no!

    completecareshop.co.uk/walk...

    This is just a very temporary suggestion and not for more permanent use when you are already on pred (NSAIDs, even topical, together with pred on a regular basis is NOT good) and but when I had PMR without pred I still skied in the winter. Something I found helped reduce the muscle pain afterwards was to slather enormous dollops of ibuprofen gel on my thigh muscles before I went out.

    It is your thigh muscles that will tell you about those steps - unless they are VERY shallow. When we went to Japan it was the steps up to the shrines and things that got me - some were very deep and even now English house stairs are a trial. Though I found a couple of weeks ago that it was far better when I abandoned the handrail and went up almost on hands and knees - leaning right forwards so my hands were climbing the stairs too if you see what I mean. Not that I'm suggesting you do that up the steps to the house in Hydra...

    Oh yes - enough medication for the whole trip plus spare in your HAND LUGGAGE (in ziplock bags and pull it out for security) and in someone else's hand luggage too. And preferably a supply in your pocket - you can get separated from even hand luggage!

  • I live on the 14 floor of a community of seniors. Our elevators were both down n I had just bought my weekly groceries. I waited 30 min n then started the climb. I went to the 5th floor where I sat down n rested. I went slow n steady n made it the rest of the way. I plopped onto my bed and waited for my heart rate to slow down. SO I should have sat n rested once more. My advice go really slow enjoy the view and then find your spot up top n stay there.

    The weird thing is I thought I wouldn't be able to walk the next day but aside from my calfs feeling pulled a bit I was fine..

    Think of how nice it is you have your son with you. You can send them off together and settle into what sounds like a cool nest.

    Oh I was so anxious about my trip my doctor gave me 10 Xanax pills. I slept better than ever n know it helped with airplane and all the walking..

  • Before I was diagnosed I spent a week with my cousins in the UK. First 36 hours or so involved travelling alone overnight across the Pond, carting my own bag around, navigating from Heathrow to cheap hotel via Underground and an entire day walking around London, mainly Oxford St and British Museum, with a heavy backpack. I was sure I'd be crippled the next morning when first cousin was coming into town to meet me, but in fact I felt better throughout that trip than I had for some time, and better than I did again until treated about eight months later! Go figure. The mind/body is a strange and wondrous thing.

  • You are a woman after my own heart with your anticipation of things that might go wrong e.g bags go missing. It drives my family mad even when they are the recipient of the water, tissues, plaster, passport number, keys, knickers, painkillers etc.

    I will hide my Pred. In various places like an alcoholic and bottles.

    That's interesting about the ibuprofen gel when you skied. I sometimes wonder if the PMR diagnosis has made me think more like an invalid. Before, I was fighting it, pushing myself and feeling guilty for sleeping. I don't want my world to become tiny.

    The shooting stick has a seat doesn't it?

    Thanks again for your time and attention and advice.

  • Have you not looked at the link? Better than shooting sticks - the seats look bum-sized.

    I found what I assume is your holiday home - it's 10-15 mins up the steps so you may need a rest or 10 on the way! Take a large bottle of water too!

  • To my cheerleaders. So far so good. The hot humid climate seems to lessen the joint pain. Last night I made the climb up the cliff, slowly, meditating on the beam from my son's phone torch, no thought of destination, just donkey- like. This is the second time. I think 15 mgs of Prednisolone rather than 13.5 has kicked in too. Looking at the beautiful view is helping my strained eyes and I'm sleeping!

    So this apparent sentence of ours can be quite surprising. Surrender and being in the minute seems to be the way forward.

    Of course the snarky voice in my head is saying the next time you post you'll have a broken ankle or something. Well it can just hush for now. Thank you for your inspirational stories.

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