Just because you have lupus doesn’t necessarily mean you can’t take a holiday. In fact, getting away, even for a day, can be great for escaping the regular routine and relieving stress.
Some holidays may involve a lot of planning, often even more for people with lupus because of the additional considerations that need to be made. As a result of this, they can potentially be stressful in themselves, so with the impending holiday season it is important to give yourself time to prepare.
“Travelling is hard. Just packing is stressful and puts my body in a panic.”
- The first and most important tip is to NOT travel while you are in the middle of a flare or experiencing any other illness.
- Pace yourself when planning your holiday. By starting the planning process earlier and taking your time, you will be less likely to experience stress.
- If you are going overseas, it may be wise to travel to a country with good sanitation systems, clean water, and suitable medical facilities.
- Obtain the name of a doctor and a major medical centre in the area where you are visiting.
If you are planning to travel overseas for your holiday it is important to tell your doctor about this before booking your trip. Ask them for:
- help in devising a health plan for your trip in case of an emergency
- a letter listing your health conditions and prescriptions
If you’re only travelling to countries in northern and central Europe, North America or Australia, you’re unlikely to need any vaccinations. For a number of other destinations, vaccinations may be necessary or recommended. You can find out which vaccinations you may need on the NHS fitfortravel site HERE.
If you have a suppressed immune system as a direct result of your lupus or through taking immunosuppressant medications (such as prednisolone (at 20mg a day or more), methotrexate, azathioprine, mycophenolate, cyclophosphamide, rituximab or belimumab) you should not receive vaccines that contain live organisms. If you are unsure whether you can safely have any required vaccinations, it is important to discuss it with your GP before booking.
After you have booked your holiday, aim to see your GP at least eight weeks before you’re due to travel. Some vaccinations need to be given well in advance to allow your body to develop immunity. Some also involve multiple doses spread over several weeks. You can find out more about booking vaccinations with your GP HERE.
If you also have a diagnosis of antiphospholipid syndrome (APS, Hughes syndrome, ‘sticky blood’) or have a history of blood clots, it is important to discuss with your doctor whether you may require an additional prescription or letter for taking heparin injections on the flight. Further advice about travelling if you have APS can be found in a Hughes Syndrome Foundation factsheet HERE.
When planning a flight you may wish to;
- Explore advanced airline check-in, which allows you to print your boarding pass in advance. Most airlines offer it within 24 hours of take-off.
- Select a seat in advance, either online or through an agent. This increases the chances of getting a seat with extended leg room.
When you are on the plane;
- Wear loose, comfortable clothing.
- Get up, stretch, and walk around during a long trip to improve blood circulation. Do this whenever you can, but at least every couple of hours.
- Consider buying flight socks (compression stockings) as research has shown they can reduce the risk of DVT and leg swelling during flights of four hours and more.
- Store your luggage in the overhead compartment so you have room to stretch out your legs.
- Drink plenty of water – this helps accelerate the blood flow.
- Do not drink too much alcohol as this can cause dehydration and immobility.
“I discovered after a recent long haul flight that I was sensitive to aeroplane cabin lights. I recommend wearing sunscreen and/or a cap in-flight.”
“Always wear compression stockings on the flight, drink at least one pint of water an hour and get up and move around the plane as often as possible. Keep your lips moisturised with factor 15 balm, otherwise they blister easily with the air conditioning on. My doctor also gives me fragmin to administer three hours before each flight to be on the safe side. “
When taking out a travel insurance policy, double-check that it includes pre-existing conditions, medical care in the country or countries you are visiting, your return fare, and any prepaid expenses such as hotel accommodation in case you need to cancel or postpone your trip due to getting sick just before you leave.
Sometimes obtaining travel insurance if you have lupus or other pre-existing medical conditions can be difficult. We have compiled a list of travel insurance companies who will insure people with lupus HERE.
The price of the premium is likely to cost more than usual, but should not be too high. As lupus can affect people in such a variety of different ways, the travel insurance policy will be tailored to each individual. If you have recently experienced a severe flare you may find it difficult to find anyone to insure you, so we recommend that you use a company which specialises in pre-existing medical conditions.
You should talk to your GP or practice nurse about your travel plans at least two months before your departure date. It is a good idea to ask your doctor for medication in case you have a flare while you are away. This may well be prednisone, especially if you are currently on it or have been on it in the past.
You should check the rules for any countries you’re visiting, including countries that you’re just passing through. Different countries have different rules and regulations about the types of medicine they allow to be taken into the country and the maximum quantity you can take in.
- Carry your medication in your hand luggage (although check your airline’s regulations before travelling) with a copy of your prescription.
- Pack a spare supply of medications (even over-the-counter ones) in your suitcase or hold luggage (along with another copy of your prescription) in case you lose your hand luggage.
- Carry a doctor’s note listing your health conditions and confirming that the prescriptions are for you. As well as helping you avoid any problems at customs, this will be useful if you need medical help while you’re away.
- Keep all medication containers together in a clear zip-lock bag to make things easier at security checkpoints.
- Some medicines need to be kept at room temperature (below 25C) or stored in a fridge. If you’re travelling to a warm country, get advice from your pharmacist about storing your medicine.
“Do double-check that you have all your medication. I forgot my prednisolone and levothyroxine and as I was away for a month I had to see a local doctor and have a prescription made out. Both incurred quite a large fee, but at least I had my repeat prescription so the doctor could check my medication and dosage.”
Accessing Healthcare Overseas
European Economic Area (Which includes EU countries and also Iceland, Liechtenstein and Norway)
If you are visiting another European Economic Area (EEA) country or Switzerland, you should ensure you have a valid European Health Insurance Card (EHIC) which gives you the right to access state-provided healthcare that is medically necessary, until your planned return home. The EHIC is not an alternative to travel insurance and will not cover any private medical healthcare or costs, such as mountain rescue in ski resorts, being flown back to the UK, or lost or stolen property. It is also not valid on cruises. It is therefore important to have both an EHIC and a valid private travel insurance policy in place before you travel. Learn more about the EHIC HERE.
The UK also has reciprocal healthcare agreements with a number of non-EEA countries and territories, a list of which can be found HERE.
If you’re visiting any of these countries and need urgent or immediate medical treatment, it will be provided at a reduced cost or, in some cases, for free. The agreements do not cover the cost of returning you to the UK or routine monitoring of pre-existing conditions. It is still important to have a valid private travel insurance policy in place before you travel.
Butterfly Traveller is a paperback book produced by the European Lupus Erythematous Federation. It is color-coded to provide medical phrases and questions in 12 languages: English, German, French, Dutch, Finnish, Greek, Italian, Norwegian, Portuguese, Russian, Spanish, and Turkish. The widely diverse features of lupus, involving virtually any part of the body, make this an essential tool in dealing with almost any health problem that may arise while you are traveling. Unfortunately LUPUS UK no longer have a supply of this book, but it can be ordered from the Lupus Foundation of America HERE.
“I have invested in a Medicare bracelet just in case I take ill when I am not with anybody who can talk for me and tell them what’s wrong. It alerts medics that I am acutely photosensitive (so hopefully they don’t put me under fluorescent light, and certainly don’t operate until the surgery lights are screened).”
Protecting Yourself from the Sun
“I don’t go anywhere very hot/ sunny as I have SCLE, but even in the northern hemisphere I need to cover up. I use ‘P20 Once A Day’ factor 50 all over as I am getting up in the morning and then top up on bits of me that are exposed regularly with a spray-on factor 100 by Neutrogena.”
All lupus patients are advised to keep sun exposure to a minimum and use sunblock regularly. It is suggested they avoid travelling to hot, sunny countries or mountainous areas where there is more UV light than in the UK. In particular, beware of the increased UV exposure with snow, sea or other water due to additional light reflected on to the body.
Sunblock should be sun protection factor (SPF) 50 or greater and effective against UVA and UVB light. It should be put on in the morning and reapplied during the day as it tends to get rubbed off or sweated away, particularly in warm weather.
“Sunsense Ultra is THE best product on the market – it has totally changed my holiday experience!”
“I use Garnier Silk 50+ sun cream. It isn’t thick and sticky so it goes on easily and soaks in quickly; which is important when you need to apply every 30-40mins on holiday!”
“When I lived in the UK I always used Roc sunscreen as I was able to get it on prescription. I’ve now been living in Oz for over 8 years and use Banana Boat 50+.”
“I recommend a UV 50+ umbrella (as you can’t always find shade round the pool/beach) and a hat.”
It is important to pace yourself whilst you are on holiday and not try to cram too many activities into one day. Pushing yourself too hard could potentially risk a lupus flare. Pacing yourself not only means stopping and resting, but also taking in all the wonderful things in the new environment – people, smells, food and scenery.
“I always take lots of good reading in case I end up stuck in bed most of the time.”
If you are travelling with other people they may have certain ways they like to do things that are not always compatible with you. Before you plan any activities it is a good idea to remind everyone that you love being with them, but may find it difficult to keep up due to your lupus. Tell them that you will do what you can to be there on time, but perhaps, not to wait for you. You may have told them this before, but it doesn’t hurt to remind them. Make sure that you are assertive about this. Sometimes it is hard to tell other people things that you are afraid they may not want to hear, but you need to be firm.
If you have children it can be hard for them to understand why you get tired, especially when they are young. Try to plan the day so that you can rest sufficiently between activities by having a partner or other member of the family look after them, or by signing them up for supervised kid’s club activities.
To learn more about pacing techniques and how to apply them, here are a couple of great resources available online;
South Devon Healthcare’s Patient Guide, ‘What is Pacing?’ – HERE
Action for M.E.’s booklet, ‘Pacing for people with M.E.’ – HERE
“The big tip I have is that you need to pace yourself. If you feel that your body is starting to hurt, you should stop. I know when my body is hurting and I push it, it’s ten times worse. I also know when my body hurts, I get the horrible ‘fog’ and just can’t function properly.”
Choosing Somewhere to Stay
When booking hotel accommodation, you may want to check the accessibility of the room and other facilities. Accessibility is not standardised in the hotel industry and can be easily interpreted in different ways. It is best to have your criteria and needs ready and deal with the hotel directly. Often hotel websites will show that they have accessible rooms, but their definitions may differ widely and they may not be designed to meet your particular needs. A good accessibility checklist is available on the Trip Advisor website HERE.
Airports have wheelchairs, motorised transporters, and attendants to help you if you have difficulty walking or carrying luggage. Wheelchairs may also be available at museums and other public institutions that you may visit. If you have joint pain or any difficulty walking, you should not hesitate to ask for these services, even if you might not regularly ask for any kind of help at home or work. You may also want to look into renting a motorised scooter or wheelchair for the duration of your trip.
Explore different travel options
There are alternatives to air travel and hotel stays. Cruises offer a chance to relax whilst travelling, with a room for resting whenever it is needed, readily available medical care, and choices of meal times. Some cruises are wheelchair and scooter accessible.
Short bus trips or train rides to areas of interest in the UK can also offer comfort for travellers. Even local events and day trips can provide the enrichment of travelling without going far from home.
***Please note that this article is written for informational purposes only and should not be a substitute for professional medical advice or treatment. Do not delay seeking or disregard medical advice based on information here. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. It is also advisable to consult a medical professional before making any changes to diet or starting alternative remedies, which may interact with other medications.***
Thank you so much to everyone who submitted their tips and experiences for this month’s topic. We’re sorry if we weren’t able to use your comment in the article this time.