Dr Sarah Jarvis is the Clinical Director of the Patient Platform, an active medical writer, broadcaster, and the resident doctor for BBC Radio 2.
Turning your travel dreams into reality can involve a lot of preparation at the best of times. If you factor in an autoimmune disease, such as lupus, the added concerns travel can pose often prove overwhelming.
However, with the right forethought, those with lupus can realise their wanderlust and head off on that holiday of a lifetime. We’ve put together a brief guide to travelling with lupus, to help make your trip a success.
What is Lupus?
Lupus is an autoimmune disease, where your immune system goes rogue. Instead of helping you fight infection, as it’s designed to do, it recognises parts of your body as enemies and turns on them.
There are two main forms of lupus. Discoid lupus only affects the skin, leading to extreme sun sensitivity and skin scarring. The more common form of lupus is SLE or systemic lupus erythematosus - because it’s much more common than discoid lupus, it’s often just called lupus. The rest of this article is about the SLE type of lupus.
Lupus can’t be cured, but there are medications which can help keep your symptoms under control. These can broadly be divided into
- ‘As needed’ medication to relieve symptoms – for instance, non-steroidal anti-inflammatory drugs such as ibuprofen, which can help with joint and muscle pain.
- Regular medication to prevent flare-ups or reduce inflammation. These can make you more prone to infections as a side effect because many of them work by damping down your overactive immune system. With some of them, you’ll need regular blood tests every few weeks. You’ll need to take both of these into account when planning your trip.
What are the Symptoms of Lupus?
Lupus can affect many parts of your body. It’s important to know these because the steps you’ll need to take if you’re travelling will partly depend on which symptoms affect you most. The most common include:
- A red rash over your cheeks and nose is sometimes described as a butterfly rash because of its shape. If you have lupus, you may find your skin is very sensitive to sunlight and you may develop rashes on other parts of your body exposed to sunlight.
- Joint pain and swelling.
- Muscle pain and weakness.
- Mouth ulcers.
- Hair loss, sometimes with scarring over the scalp and patches of complete hair loss.
- Tiredness, weight loss and sometimes mild fever.
- Anaemia (which can contribute to tiredness) and less often, issues with low white cells (making you more prone to infections) and low platelets (which means your blood doesn’t clot properly).
- Headaches and swollen glands.
- Kidney problems.
- Depression and anxiety.
Before You Go
Pick Your Destination
Think carefully about which holiday would work best for you. For example:
- If you’re very sun-sensitive, it makes sense to avoid very sunny destinations.
- You may find a humid atmosphere causes your lupus to flare. If so, check out the humidity at your destination (it often varies over the year, so you may be able to go to your dream location if you pick your season) and make sure your accommodation has air conditioning if it’s going to be at all warm or humid.
- If you have problems with your joints or muscles, an activity holiday is probably not for you. But there are plenty of spots where you can wander gently and still enjoy the sights.
Get Your Medication Sorted
- Make sure you order your medication in plenty of time from your GP. Take enough to last the whole holiday and at least a couple of weeks extra, in case of emergencies.
- Take a list of your medicines and pack them in their original packaging. You can get lots of tips from our article on
- If you’re taking steroids, you should definitely carry an emergency card or Medical alert necklace or bracelet. Stopping your steroids suddenly can make you seriously unwell.
- If you need regular blood tests to monitor medication side effects, talk to your medical team about arranging them around your holiday.
READ MORE: Travelling with Medication
Pack Smart
- If you’re sun-sensitive and are going anywhere sunny, make sure you pack plenty of long-sleeved tops and trousers in cool, breathable fabrics.
- Don’t forget a broad-brimmed hat!
- Take plenty of high-SPF sunscreen.
- Check your shoes are comfortable, with well-padded soles. If your trainers are getting old and worn out, you’re much more likely to struggle if you walk too much.
- Take a couple of good books or a playlist of your favourite music or podcasts in case you have to stay in and rest.
Take Precautions
- Always take out specialist medical insurance. Choose a specialist provider which will cover your condition – Medical Travel Compared offers lupus travel insurance designed to give you the peace of mind you deserve on your trip.
- If you’re travelling in the EU, make sure your EHIC or GHIC card is up to date. But remember – this won’t cover all medical care and it doesn’t mean your care will be free. So it’s essential to have travel insurance as well, even if you’re in an area covered by the GHIC card.
READ MORE: EHIC, GHIC & Travel Insurance
- Check out the closest medical centres in your destination of choice so that you know where to go if you really need help. Write down the relevant phone numbers and addresses as well as work out how you would get there if you were in a lot of pain.
- Talk to your medical team about an action plan, which means you’ll know what to do in different medical situations and when you need to seek urgent help.
While You’re Away
- Build in rest days and don’t do too much on any one day.
- Be prepared to adjust your plans if you’re tired, or your joints or muscles are troubling you more than usual.
- Wear your sunscreen and hat even if it’s cloudy.
- Stay hydrated. This is especially important if you have kidney problems. But remember, being dehydrated can also leave you tired and prone to headaches – and if you have lupus, you’re more prone to both.
- Avoid too much alcohol. Alcohol can increase inflammation in your body, making you prone to a lupus flare.
- Try and avoid contact with people who have obvious infections. Many of the medicines used to treat lupus, including steroids and medications which damp down your immune system, put you at higher risk of severe illness if you get an infection.
- Take time zones into account to make sure you take your medicine regularly.
Travelling with lupus requires a bit of extra planning and consideration, but it should not deter you from exploring the world and enjoying new experiences. By carefully selecting destinations, preparing thoroughly, and maintaining open communication with your healthcare team, you can embark on adventures that enrich your life without compromising your health.
Remember, your well-being is a priority, and every choice you make, from the sunscreen you pack to the emergency contacts you note, contributes to a safe and enjoyable journey. With the right precautions, travel can be not just possible but wonderfully rewarding.
For more articles like this, make sure you explore our blog and guides.