After a few days of being stable in my health with covid behind me. Went out shopping yesterday and the air turned very cold here in London/Herts- and by last night was experiencing a bad flare. Couldn’t walk on my leg, Right Elbow and fingers so went to bed by 9pm and had the heating on
I took a diclofenac tablet at 6am and will take another this evening - but am now wary about travelling to Tenerife on Friday for fear of ending up having a full blown flare whilst there for the week. The wife had been looking forward to this trip as a nice break in the sun after she’d had a procedure though this was cancelled and has now been rescheduled for May.
how many holidays have I ruined this past few years because of my condition - it’s really dispiriting and here we are both now sitting with me feeling guilty and her thinking am swinging the leg having had words.
Holidays feel like they are a thing of the past just now but I don’t want to go somewhere loaded up with anti inflammatories only to end up laying on the bed all week to sore to move contemplating having to come back in a weeks time. Do many other people end up experiencing this?
I think the cold blast we got yesterday really caught me out - wished I d stayed in now.
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Have you thought about speaking to your Rheumy Nurse/team/contact, etc., to see if you would be eligible for a depot (generic) steroid injection given in your buttock. As that would dampen down any niggling flares and give you peace of mind for your holiday. I threw in ‘the towel’ at end of March as I have been struggling since January while in between biologic medications and was so exhausted physically and mentally. What a difference this has made, improving my mobility and energy levels (why did I wait so long to ask for the depot steroid)? Only problem is I am overdoing things and need to pace myself.
Believe me, you will benefit from getting away enormously on a psychological level and the guaranteed ‘heat’ will be appreciated by your body. Book airport assistance so the long marathon to the boarding gate does not knock the stuffing out of you. I travelled to USA over Xmas flying from Scotland to London then Florida and airport assistance was a ‘godsend’. You need to get over any guilty thoughts, you have an invisible auto immune disease - so do not be a martyr! Book the assistance online with your airline or travel company.
every day’s a school day!! Only ever heard/seen drugs that are called/labelled depo-xxx which are intramuscular. But yes depot is slow release intramuscular - thanks for my learning.
hi - we realised I wasn’t up to travelling at this point so opted for a few days in Cornwall in a nice hotel where am able to read and sleep and eat. We re going to Spain in 3 weeks.
On medical advice am not taking any RA meds just now as have been so unstable due to covid, immune issues and flares. Lots of healthy soups and meals
I have bought a travel bag (from Amazon ) for injection into which an ice pack will fit. I’ve got a copy of the prescription should customs wish to see it. I’m told this is more than sufficient as most of our flights are around 2 hours. I think we are endeavouring to make sure a trip doesn’t clash with injections though in all honesty as much as poss.
I used the iCool Medi Cube. It has two ice packs which makes it very heavy. I had my cabin suitcase, handbag, and the ICool bag (separate as it did not fit in the little hand luggage case) and was not questioned about it until security when they wanted to do a ‘drug screen’ (pardon the pun) which they didn’t do in the end after viewing accompanying Dr’s letter. It has a little plastic pocket on the side to store your Dr’s letter. Security seemed more interested in my boots!!!
Pros for buying this brand was the 72 hours guarantee and recommended by Diabetes UK for long haul travel. Sometimes flying from Scotland to London, then onto Florida can take 24 hours total without any delays factored in.
GOOD TIP: purchase from DiabetesUK website for a £10 reduction by ticking that you have a long-term healthcare condition for VAT exemption. It cost me £59 or £69 (brain fog and menopause brain)!!!!
I completely understand the guilt, I experience that too. Defo get some short term relief, I took steroids for a holiday last year, made all the difference, and take up any travel assistance you can get....you need sunshine too 😉
Much sympathy to you both. I can't count the number of times an evening out, a day out or holiday has been spoiled by my feeling wretched. The guilt is real! Travel assistance is wonderful but, a word of warning, when Himself and I took off on holiday once they didn't have room for both of us on the buggy and it was temporary panic stations until we reunited at the gate.
have you thought about doing different holidays? Last yeat I didn!t have a good year, but we had a couple of short breaks about an hour or so from home. Don’t know where you are in the UK, but I have had great weekends in Brighton, Norfolk and Lindesfarne.. A nice hotel with a spa and sauna perhaps?
funnily enough we ve been watching BBC 2 tonight and are gonna head down to Cornwall for a bit of fresh air and nice food. Probably best to ease up and build ourselves up
I had a mini flare and I'm now I'm holiday in fuertentura first full day it has lifted me physically and mentally the dryer climate and warmt is magical
hi there. The flare really floored me but was aggravated because of my knee injury. Got home the other night and literally went to bed. Physically stable today but that’s because I’ve taken Diclofenac now which are great at managing inflammation. My knee is strapped up. I’m trying to see if we can take our timeshare week later on - and have managed to move the flights for £200
Going to Cornwall next week and then Spain in three weeks ( hopefully) Ive got an appt with Orthopaedic s in two weeks so hopefully something will come from that.
I love the heat - it’s great for mental and physical well-being; I just hoped I can get moving again
hi there- thanks for replying. Things are a lot better today having taken diclofenac so we’ve got a Spain trip in about three weeks and have lengthened it plus rearranged flights to Tenerife. We ve got a few days away in Cornwall next week in a nice hotel as well. But it just shows how this RA can come along, floor you and then ease off again.
have you considered going on a cruise? No flying, no messing about and the operators look after you really well and make things easy for you. Then if you’re not up to doing something, your wife still can.
Fantastic! My tip is to choose your cabin number. May mean an additional payment. Don't get one under the pool/ theatre/restaurants and pick by a lift. Some of these ships are humongous. I generally get a cabin by aft lift as that lift goes to the restaurants and bars that are more midships.
People at cruise terminal will be very helpful too. Last time they took my case out of the taxi stuck me in a wheelchair and the time from arrival at Horizon terminal to being in the bar was under 15 minutes 😄.
have to say a cruise is just fantastic as you can pace yourself and it’s a very relaxed pace. I’d love to do another as the heat really helps mind body and soul.
1. it will be warmer there and you will probably feel much better in the warmth. I hope you manage it, and enjoy it.
2. I have the option, negotiated with my rheumatologist some years ago, of taking a short course of prednisolone by mouth to tide me over if I have a flare. I keep them in a drawer and use them sparingly. My partner often says that I should use them more often because I'm so much nicer to be with (oh dear!) after taking them, but I'm very cautious thinking about the possible side effects of long term use.
that’s a bit like me with my supply of diclofenac. It really attacks the inflammation. I just take one and it really improves things - I don’t like to depend on them or take them for too long as they might work against my bisoprolol for blood pressure
Hi oldtimer Im going away Sunday to visit my sister in Wales for a few days, I'm still building up my sulfasalazine and I am having a flare, hands and arms don't want to work at all again. I have some 5mg Prednisolone in my drawer. How much do you take to get you through? I've rang Rheumy nurse but not sure when they will call back.
I'm sorry that I can't give you an answer as there's too many variables. The specialist nurse will look at your records for what has worked before for you as an individual. It also depends on what other treatments you are on, your weight and what the risks to you as an individual are.
I know what usually works for me but that's me and lots of times I've done it. But the results sometimes still differ and I have to ask for advice. I hope you have a phone call soon!
The nurse says sulfasalazine isn't working so I'm seeing the consultant on 2nd may. In the meantime she had a word with another consultant and they told my GP to prescribe 30mg Prednisolone for 5 days tapering down 1 every 5 days. By last night my arms and everything were much better after the first dose! Such a relief. She reckons I'll be put on JAKs. We'll see. This nurse is great as she has psoratic arthritis so really understands.
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