Hi everyone! This is Kate Gilbert, checking back in to the forum after a loooong time away. It actually feels good to be back, and I'm amazed and impressed at how the stalwarts like PMRPro and DorsetLady have carried on serving the community here with dedication, energy and humour, for years. Incredible women!
It's hard to believe that it's almost nine years since the second edition of my 'Survival Guide' book on PMR and GCA came out. In that time I've been moved and humbled by how well people have received it. I've been waiting for somebody else to come along and write a new one but, as that hasn't happened yet, it's high time to bring out a new edition with some shiny new sections and up-to-date information on diagnosis and treatment. Even where things haven't changed (it's still wall-to-wall steroids for most of us), it's worth pointing that out.
I'm teaming up with Dr Vanessa Quick who will be adding some specific sections from her own perspective as a practising rheumatologist. It's very exciting!
Right now I'm trying to write a new section on travel and holidays with PMR and GCA. I need your help! Please come back to me with your advice and tips, whether it's a weekend away with the family or a once in a lifetime adventure, whether it's a 'Go for it!' or 'Don't even think about it!'. I'd love to hear your range of opinions.
If you don't want to post here, feel free to send me a direct message in the chat.
All the best
Kate
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Polywotsit
PMRGCAuk team member
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Above all - if you can't do something at home without payback - don't assume it'll be fine on holiday!! If you struggle with the stairs at home, you probably won't be walking up the 199 steps to the abbey at Whitby in temps in the mid-teens - and you are even less likely to manage 100 steps to an appartment on the cliffs in Greece in temps in the low 30s!!
Start your break by booking airport assistance - and you stand a chance of arriving at your destination feeling reasonably human. If it is a long trip to the airport by car - travel the day before and have a night in a hotel.
Take all your medications in your HANDLUGGAGE and don't let it out of your sight - even Ryanair accept you aren't going to let your handluggage with medications be checked in for their convenience! Take at least 3 times the amount of pred you think you will need - just in case.
Your book was a huge help when I was diagnosed with PMR some years ago. Unfortunately I now have Adrenal Insufficency. Just a suggestion for your new book - addisonsdisease.org.uk has a wonderful document under the travel page which is a translation into many languages of instructions for a doctor or hospital in another country should you suffer an adrenal crisis there. I am also subscribed to pituatary.org.uk and both websites sent out an email this last week about the immediate stopping of the ready mixed emergency injection for an adrenal crisis. Invaluable knowledge but such a blow for people like me who have shaky hands and make a thorough mess of opening glass vials etc. Ah well!
Ooh, you've just reminded me that a drug sniffer dog at Birmingham Airport once got extremely excited about my bag when I had my pred on me. It was quite alarming!
Hi Kate ... Good to see you are back on the forum! And brilliant that you are writing an update of your book with Vanessa.
I've had PMR for 13 years. Off pred for a few months last year but back to 4/5/4/5 at the moment.
To answer your question I always take spare prednisolone with me when I go away. So far I have not needed it but I feel happier and more relaxed with some close by!
Five and a half years with PMR. Currently taking 2.5mg.
Our daughter, son-in-law and 2 of our grandchildren live in Portugal so we make frequent trips there. I don’t take any extra for those journeys.
We did go to America for 10 days and I took extra for the journey there and back and a day either side but managed fine whilst I was there on my normal dose. I always have extra with me wherever I go.
Still too proud to ask for airport assistance.
Re PMRpro’s remark about attempting steps. I did pay very heavily for 100 or so steep steps in Sicily up to the cable car even with a rest every 10 steps. 🙄
Never be too proud to take airport assistance. It's First Class. You are whisked through to the gate really fast, no queuing, no stress and they'll stop off at the shop so that you can buy anything like water plus stop at the conveniences. Totally invaluable. Try it and you'll never look back. 👍👍
When you request airport assistance where do they meet you? When you check your bags in? Or is there a place you go to? Always wanted to ask that question and then forget! Just not sure how the whole journey works for that.
Most airports have a SA desk [LHR is probably the most unhelpful].
Once you've booked in and got rid of hold baggage, SA is organised on all journeys - no matter how many transfers, then you show boarding pass at SA - and you're "in the system" . You will be taken through passport control etc to lounge initially and then picked up from there and taken through departure gate to plane door.
Alighting plane you will be collected from plane door, taken through passport control to baggage collection.. if in wheelchair you will then be taken to arrivals and meet up with whoever is meeting you. However at LHR because you are transported by buggy to baggage collection, you may have to walk a little way.
If you are transferring then picked up from plane - taken to lounge - then taken to ongoing plane as above..
Wheelchair users are usually first to be loaded on plane, and last to be unloaded.
Don’t be too proud to ask for assistance! My husband felt the same as you, but with his spine condition and travelling back to the UK from Singapore with an awful virus, he was soooo grateful for the help available.
Four years into PMR and GCA and I support what other posters have said. I would just add, try if you can to pre-warn travel companions and friends of your likely limitations. My friends and family are used to me pacing and resting at home - yet somehow seem to think that the stimulation of being on holiday will give me more energy- whereas the reverse is true 😳
Just a thought…. probably worth trying to communicate realistic expectations!
Thank you for your book Kate. My problem with long haul travel from Australia and back with time differences was trying to work out when to take my prednisone, how many hours had passed day and night since the last dose.
I’d like to know what would be a safe dosage for travelling abroad if tapering below 5mgs and hoping to get the adrenals working. An adrenal crisis abroad would be scary!
And sometimes hospitals outside the UK are a lot better at PMR/GCA and adrenal problems than the NHS! Depends where you go of course - but there are places I wouldn't go to.
It was very scary! I was given the 'wrong' antibiotics the day before we went on holiday to Majorca. Ended up at a local private hospital and paid out a lot of euros. We weren't sure whether we would get our money back from the insurance. I discharged myself as they wanted to put me on a drip! No alcohol, eat lots of fruits and vegetables and walk a lot was the advice from the hospital. On the plus side, I had lost a good few pounds by the time we got home from our hols!
I've been travelling in a motor home from 6 weeks after diagnosis to the present time. Away 4 months so far and 2 more before home. Europe and N Africa. A few days before leaving I 'erupted' in varicose veins and then also became concerned about strokes as well as everything else.
My GP made a plan with me and prescribed sufficient steroids to see me through (not all will do this for long periods away). I would suggest all travellers from the UK sign up to the NHS app. In that way you can share your health record with any medical practitioner anywhere in the world.
I prepared brief notes on PMR, potential signs of strokes and GCA for my partner (and anyone else who might need it); all my medical details, doctor contacts and a brief time line of treatment and doses. I looked up the health care systems of each of the countries and made a note. UK gov provides a list of English speaking doctors in many countries.
PMR (and steroid) symptoms change over time and I've had a few concerns over the months. Forums such as this are invaluable (even if I had good access to a GP I would use this first).
I cannot and do not do much sight seeing and I live quietly, focussing on exercise, rest, fresh air and nature, so not typical travel. If I were to advise anyone else it would be to say - confront your fears and plan for them; let everyone who needs to know, your limitations and their implications; don't overdo it, build in quiet and rest and be content with what you can do. 'Go for it' but gently.
Your book was a life saver for me - thank you - I have recommended it on the forum loads of times - may be include something on travel insurance - I think Saga only charge a couple of pounds extra for PMR?
Hi Polywotsit. I have been camping for the past few years using my vehicle to sleep in (am way past tents!!). My latest - a Vauxhall combo - is slightly larger than my previous Fiat - so I can use the portaloo inside when I don't erect the awning. (There was only space for one leg alongside the loo in the Fiat - tricky!!!). I live in fear of forgetting my pred so I now keep an emergency kit in the car - spare undies, t shirt and meds. When I remember, I switch the latter to keep them within their use by date. I'm a wimp so only stay on campsites from where I wander - increasingly slowly and stiffly. I love it. Good luck with your book update 😀
I have been holidaying with a group of colleagues for several years. They are all nurses ( childrens) just don’t understand PMR. They think if we have several stops to rest I will be ok. Last year I decided it was too much and didn’t go. This year I am going for 1 week instead of 2 and staying in another hotel next door to theirs. They don’t know I am going and will be so pleased. When I decide to dip in and out of their holiday they will just be happy I am there. Allowing me to rest as I need. The hotels in Zanta are quite small so it won’t feel intimidating being alone. I have booked assistance at the airport.
Hello I bought your first book and gave it to my OH so could understand PMR that was nearly eight years ago (he still does not understand) I can recommend it.
Hi Kate, thanks for your book. It has been my companion over the past 5 years together with this excellent forum. As for holidays, you'll find my post from yesterday on exactly that, 'Fatigue and holidays'. It's so disappointing when a few lovely treat days that all your family want you to enjoy just wipe you out. Managing the adrenal issues on low doses of Pred is very taxing, let alone having to disappear for naps. I think those around you perceive you as 'cured ' after all these years and have no idea of the management you are doing to live a seemingly normal life. It's just boring to give constant reminders. Good luck with the new book, I shall be first in line for a copy.
Your book has been helpful Kate, thank you! I have nothing much to add to these brilliant comments except to say that it's important to have things under control before you go. Don’t think that a few bearable pains will come good on holiday, they won't. Take enough pred to manage the inflammation way in advance so that you are stable, if that makes sense. And then go, just go!! We need to live, explore, see our families and friends while we can. Happy travels!!
Hi Kate. Good to hear that you are back. Your book was a life saver for me when I was first diagnosed. Lots of people have already made some excellent suggestions. I would also add: If you are going to a warmer climate than what you are used to, be mindful that our bodies may act differently once in a hot climate. When I had to finish work, I moved abroad to live to help my mind to focus on something else other than my illness. I have always loved the sun but unfortunately, since diagnoses, I have found that my body does not regulate its temperature as well as it has done in the past. I have learned the hard way, nearly passing out because I have been unable to find any shade when my body has been overheating.
I would also add, in the case of any accidents, be sure that you are wearing a bracelet that indicates that you are steroid dependent.
Above all, don't be afraid to travel with this illness. Just maintain the level of activity and rest that you are used to at home and enjoy the distraction of being somewhere different. It really can be a tonic - especially if there is also a spot of gin involved 😀!
Hello Kate - like you, this is my first time back in the forum for ages. I just drop in every now and again.
Your book, and this forum, were a tremendous help when I was diagnosed with PMR back in 2018. I’m a bit of a drama queen so when told I had PMR and I’d have to take pred, it seemed like the end of the world! I don’t think I’d have coped without this forum and your book. I was very fortunate - I was off pred after about a year and I have been free of PMR ever since.
I look forward to seeing the new edition of your book... which I hope I’ll be reading out of interest rather than necessity!
I only go abroad if I cruise! It's a lot more civilised and allows plenty of time to rest without holding travelling companions back. It's easy to forget travelling in the uk can be a total nightmare. If I have to drive I stop every 1 - 11/2hrs. If it's more than a 5 hr journey I do an overnight stop. Initially I baulked at the thought of extra time and expense, but it makes such a difference and means I am not quite as useless on arrival. Used to do the long journeys by train but unreliability and having to carry stuff knocked that on the head. Always have emergency pred about my person.
I find the Premier inn fine. Their beds are good (better than mine) and whilst I can still get in and out of a bath, a long soak is great. I am an early morning person so go to bed early. Horses for courses....
Great you are writing an updated book, the original was really useful when I knew little about PMR. A quick comment slightly off topic - has anyone mentioned how useful smart watches can be in pacing yourself on holiday or just generally?
I find my Garmin really helpful for pacing myself especially the body battery which shows rest and stress at reminding you to take a break. HRV and sleep great to.
I am four years into my pmr journey currently on 3.5mg. I would say make sure you take your emergency steroid cards with you. If possible take a local language translation as well if going to a non English speaking country. Consider getting a bracelet before you go.
I put off going to Costa Rica for years as I had found long haul flights always resulted in a flare. Bit the bullet and went last year. Flew business class, had an individual itinerary through my travel agent, took private wildlife tours do that I didn’t slow anyone down and could stop when I had had enough.I did actually cry everyday( some anxiety and some pain). However it was a wonderful holiday and I have some great memories.
We are off to Sri Lanka next week with all the same kind of preparations. I am still a bit anxious but do want to see the world!
My advice is: Take special assistance, take any walking aids you may need, take all your meds plus extra, have a couple of nights to rest from the journey before being more adventurous and, above all be realistic about what you can manage and rejoice that we can do it, just a bit differently!
Having recently returned from Rome for a week I got advice in advance from this forum. You may find it linked to your post. I am on 1mg pred and my advice from my experience is:
1. Up your pred dose by 5mg on the day of departure and for the duration of your holiday. It's not just the excursion but the stress that it's needed for.
2. If you're going somewhere that involves a lot a walking, book for twice as long. We spent a week in Rome doing everything most people do in 3 days. It takes the pressure off and meant we could take our time.
3. I was advised to take a folding stool from Amazon. They are light and can be carried on your shoulder.
4. I always take my toddler pillow. I sleep with it between my knees, but on the hard bed in the hotel I found it useful to put it just below my pillow where it helped my back. It was also useful as extra back support on the hard plane seat.
5. Book private transport to transfer between the airport and the hotel and back. Again it saves stress and walking around finding public transport. Jet2 were brilliant for this.
I'm another fan of your book, which a friend lent me on diagnosis, and looking forward to the update. I was diagnosed last Spring and did a not too strenuous walking holiday in Spain in the autumn, on 9mg pred. I had good advice here about being cautious and allowing for rest days, warned my husband we might need to have 'sit on the beach and take public transport' days......and it all went very well. We were walking while our baggage was transferred to the next stop, and I took two lots of prednisolone with me, one to carry one to leave in suitcase just in case either went missing somehow.
Hello Polywotsit, How lovely to hear from you. I have made good use of your second edition book, so thank you most sincerely.
On the subject of travel, it’s perhaps worth mentioning that travellers should check with the country they are going to visit that their medicines are not banned or on the controlled list. Who knew that Dubai had an issue with Pregabalin and Diazepam, for example?!
Also, some countries are quite strict and require a letter from your doctor listing each medicine / drug with amounts prescribed.
I am quite worried about travelling with PMR but don’t want to give up my holidays, so looking forward to hearing some tips and advice.
I would like to be the voice for people with PMR who have steroid induced muscle myopathy. Go on holiday? what a ridiculous idea...I can only walk about 200 meters and then need recovery time. Use a wheelchair? Sitting in a chair is a tremendous strain on my back muscles. I work full-time (online) lying back on pillows in my bed. Except for medical appointments and the 100-200 meter walk, I haven't left my home for 5 years. I am not alone. Others have complications due to other diseases crowding in.
Yep, this is important - we need to make sure that the situation of people with multiple conditions is sufficiently recognised - especially as the older we get, the more complex our mix of conditions becomes. Thanks for the nudge.
Thanks ever so much, but don't get too excited! The 'new book' is a new edition of the old book. Working hard to get it up to date and bringing in the perspective of a practising rheumatologist. When I wrote the book at first I wasn't sure how it would be received by medics. In fact it has been received very well. I kept waiting for somebody to come along and publish an update. But they didn't! So I'm getting stuck in.
Hi Kate, GCA since 2022 and half way through our first long haul since - last week a Caribbean cruise, this week in a staffed villa with 3 other couples of 50 years of friendship, 6 of us celebrating our 70ths. Take plenty of all meds; book airport assistance. This was invaluable when we changed planes at JFK and our whole group got through immigration quicker (relatively speaking) as they went though with me! We chose a cruise and stay to suit the whole group, whose energy / health levels vary, from super fit to my problems. It’s been fantastic. Currently on 7mg and GCA seems controlled. Had a couple of arrhythmia episodes on this holiday despite an ablation in September but I sit it out, rest up and keep taking the beta blockers, increasing by one pill at night if it happens. We’ve been short haul to Portugal several times. Even though I’ve flown locally on those occasions I’ve still booked assistance. Make sure your travel insurance knows and keep meds in your backpack. While here I’ve had weird bruising on my arms which I’ll have to follow up on return but so far all good. I have had further health issues (see bio) since 2022 so it’s been a bit of a milestone to get here to celebrate our 3 score years and 10!
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3 months and counting...
Side effects of Prednisolone 
GCA symptoms coming back. Need advice.
