Safe Travel With Lupus: What You Need To Know
Traveling with systemic lupus erythematosus (SLE) presents its unique challenges. Making sure that you stay as healthy and safe as possible is essential. This article is taken directly from “The Lupus Encyclopedia: A Comprehensive Guide for Patients and Health Care Providers” chapter 42
NOTE: Johns Hopkins University Press, publisher of The Lupus Encyclopedia, is a nonprofit publisher. If you purchase JHUP books, like The Lupus Encyclopedia, you support projects like Project MUSE.
Preventing Infection During Travel with Lupus
One of the most important things to determine when traveling to another country is whether you need to take any special precautions to prevent infections. Patients on immunosuppressants are at higher risk of poor outcomes if they get infections.
List of Commonly Used Immunosuppressants for Lupus:
- steroids (such as prednisone and methylprednisolone)
- methotrexate
- leflunomide (Arava)
- azathioprine (Imuran)
- mycophenolate mofetil and mycophenolic acid (CellCept and Myfortic)
- cyclophosphamide
- calcineurin inhibitors (cyclosporine, tacrolimus, and voclosporin)
- biologics (such as belimumab, anifrolumab, obinutuzumab, rituximab, abatacept, tocilizumab, and certolizumab)
- Janus kinase inhibitors (JAKi) such as tofacitinib (Xeljanz), baricitinib (Olumiant), and upadacitinib (Rinvoq)
Sometimes vaccines are recommended and even required. Some vaccines, such as those for MMR and yellow fever, contain live virus and should be avoided by patients on potent immunosuppressants. Some countries have an increased risk of malaria, and taking additional antimalarials may be necessary. Hydroxychloroquine may prevent malaria in areas where chloroquine resistance is not present, but it is ineffective in most areas.
Some places have a high risk of infections from contaminated water and food. Traveler’s diarrhea can occur, for example. Having a supply of antibiotics from your doctor while you travel is helpful. Insect-borne (mosquitoes, flies, ticks) illnesses are common. Wear repellants on skin and clothing, wear protective clothing, and avoid being outside during the insect’s prime feeding period.
Use strict protection, such as condoms, if you engage in sexual contact. Hopefully, you have already received your vaccine against human papillomavirus (HPV).
Infections can easily occur from swimming in freshwater. Wear footwear even on beaches to avoid contact with animal (and even human) feces and infections such as hookworm.
Traveling increases the risk of respiratory illnesses (influenza, colds, COVID-19). Be extra diligent with hand-washing and ensure you are vaccinated. If the COVID-19 pandemic is still ongoing in the area where you are traveling, adhere to strict social distancing measures and wear a mask.
It is best to see a travel medicine specialist for advice before traveling. Find a clinic close to you at istm.org/AF_CstmClinicDirectory.asp. You can also check with the Centers for Disease Control at cdc.gov/travel. Select the country you are traveling to, and the site will provide sound advice. Plan your travel strategy at least one month before.
Other Health Safety During Travel with lupus
Always protect yourself from ultraviolet (UV) light and make sure you take an adequate supply of sunscreen and UV-protective clothing.
Ultraviolet Protection Measures
• Wear sunscreen on all exposed skin areas every day, even if you stay indoors.
• Use the highest SPF tolerable (SPF 70 or higher is preferable).
• Use “broad-spectrum” sunscreen (blocks UVA and UVB).
• Use water-resistant sunscreen labeled “80 minutes” or higher.
• Apply sunscreen 30 minutes before going outside.
• Apply enough sunscreen. Most people do not apply enough.
• Do not forget your lips, ears, nose, neck, upper chest, hands, and feet. Consider sunblock sticks for the lips, ears, and around the eyes.
• Sunscreen gel may be best for oily skin; lotions may be best for dry skin.
• When outside, reapply every 2 hours; inside, reapply every 4 to 6 hours.
• Avoid the sun between 10:00 a.m. and 3:00 p.m. (standard time). A good rule of thumb is to avoid outdoor activities if your shadow is shorter than your height.
• Always wear a wide-brimmed hat outside.
• Consider wearing tightly woven loose-fitting pants and long-sleeve shirts.
• Wear tightly woven, dark, dry fabrics (which keep out UV rays most effectively).
• Wear sun-protective clothing with a UPF of 30 or higher (50 is better).
• Consider using Rit SunGuard when you wash your clothes to increase their SPF.
• Do not use UV drying lamps when you get your nails done.
• Wear UV protective glasses
• Never sunbathe! If you become tan, you did not protect yourself adequately from UV light.
• Instead of a natural tan, use artificial tanning sprays, lotions, and gels.
• Always drive with the windows up.
All SLE patients, especially those who are positive for antiphospholipid antibodies, are at an increased risk of developing leg and lung blood clots. Prolonged sitting and lying down (in a car, train, or plane) further increase these risks. Travel times of more than four hours are twice as likely to result in a double risk compared to shorter trips. Avoid wearing anything with a tight waistband or that constricts the tops of your legs. Compression stockings below the knees can help. Drink plenty of water to stay well-hydrated. If you do not take low-dose aspirin, ask your doctor if it is recommended for you. Aspirin thins the blood and could potentially reduce clotting. Make sure to get up and walk around regularly. While sitting, repeatedly move and squeeze your foot and leg muscles. Use a timer on your smartphone to remind you to do this every half hour or so.
If you have severe lung and heart issues, such as pulmonary fibrosis or pulmonary hypertension, see your lung or heart specialist beforehand. Some people need to take oxygen on the plane since jet planes can have lower oxygen levels at high altitudes.
Dryness of the airway passages in the head (sinuses and Eustachian tube) from Sjögren’s can result in excruciating pain from air pressure changes during takeoff and landing. Using saline sprays and gels in the nose can help prevent this. Consider using decongestants (such as phenylephrine, Sudafed) in pill form and nasal spray (such as oxymetazoline, Afrin) 30 minutes to 1 hour before take-off and landing. If Sjögren’s causes you to have sinus and nasal congestion, consider taking guaifenesin (Mucinex) and fluticasone (Flonase) daily before and during your trip. Additionally, refer to my articles about caring for dry skin, dry eyes, and dry mouth.
It is usually safe to fly during an uncomplicated pregnancy. Most airlines allow pregnant women to fly up to their 37th week (32 weeks for twins). To help prevent complications, take precautions such as staying well hydrated and wearing below-the-knee venous compression stockings.
If traveling between time zones, jet lag can cause sleepiness, weakness, and mental fog. Napping at your destination at least 8 hours before bedtime there and for no more than 30 minutes can be beneficial. If you use a non-UV-producing light to normalize your biological clock, bring it with you. Use your light in mid to late mornings as soon as you arrive at your destination, or go outside and use your UV protection at those times. Another option is to take 1 mg to 10 mg (3 mg usually suffices) of melatonin (chapter 39) on the night of arrival and for the next five nights. There are also smartphone apps (such as Timeshifter) that give personalized recommendations on the basis of your flight times and time zones. Practice the following sleep hygiene techniques to help your sleep cycle.
Sleep Hygiene Techniques:
• Participate in an online “cognitive behavioral therapy for insomnia” course such as at www.cbtforinsomnia.com or www.sleepio.com; or use the app CBT-I Coach.
• Maintain a regular sleep schedule by going to bed and getting up at the same time every day.
• Practice stress reduction techniques. Practice mindfulness daily, such as breathing exercises.
• Exercise daily; mornings and afternoons are best. Don’t exercise right before bed.
• Avoid naps late in the afternoon or evening.
• Finish eating 2 to 3 hours before bed; a light snack is fine, but avoid foods containing sugar, which can stimulate the mind and interfere with falling asleep.
• Limit fluids before bed to keep from getting up to urinate.
• Avoid caffeine 6 hours before bed.
• Do not smoke. If you do, don’t smoke for 2 hours before bed; nicotine is a stimulant.
• Avoid alcohol 2 to 5 hours before bed; alcohol disrupts the sleep cycle.
• Avoid drugs that are stimulating (ask your doctor).
• Avoid mind-stimulating activities a few hours before bed (reading technical articles, listing tasks to do, trouble-shooting, paying bills, etc.).
• Have a hot bath 1 to 2 hours before bed; it raises your body temperature, and as your temperature decreases afterward, you will get sleepy.
• Keep indoor lighting low for a few hours before bed.
• Establish a regular, relaxing bedtime regimen (aromatherapy, drink warm milk, read, listen to soft music, meditate, pray, relaxation/breathing exercises).
• Ensure your sleeping environment is quiet and comfortable (comfortable mattress and pillows; white noise such as a fan; pleasant, light smells).
• If pets wake you, keep them outside of the bedroom.
• Use the bedroom only for sleep and sex; never eat, read, or watch TV in bed.
• Never keep a TV, computer, or work materials in your bedroom.
• Go to bed only when sleepy.
• If you can’t sleep within 15 to 20 minutes in bed, go to another room, read something boring under low light, meditate, pray, listen to soft music, or do relaxation/breathing exercises until sleepy.
• If your mind races, preventing you from sleeping, perform mindfulness (chapter 38) for 5–10 minutes before bed. Use an app such as Relax Lite or Headspace.
• If you have dry mouth, use a mouth lubricant like Biotene Mouth Spray, or use xylitol lozenges (such as Xylimelts) before bed.
• Avoid “blue light” (smartphones, computer screens) 1 hour before bed.
• Get exposure to light first thing in the morning to set your biological clock. Consider using a non-UV light, like Philips goLITE BLU or Miroco UV Free Lux Brightness light.
Medications and Travel
Bring an adequate supply of your drugs with you. If you need to fill your prescriptions early, ask your doctor to write an explanation for your pharmacist explaining your need for an early refill.
During lupus flares, some patients need extra steroids, such as a methylprednisolone (Medrol) dose pack. Fill out the “Your Lupus Flare Plan” with the help of your doctor. Bring it for reference in case you flare during your vacation. If you have adrenal insufficiency, you need extra steroids for stressful situations such as injury or infection. Bring these with you in case you need them.
Some drugs, such as belimumab (Benlysta), need to stay cool. Pack them in insulated packaging along with cold packs. When booking your hotel, request a room with a refrigerator in advance.
KEY POINTS TO REMEMBER 1. If you are traveling to a foreign country, it is recommended that you consult a travel medicine specialist. Go to istm.org/AF_CstmClinicDirectory.asp and cdc.gov/travel at least one month before your trip. 2. On plane flights, take measures to prevent blood clots and inner ear and sinus problems. 3. If you have severe lung or heart problems, see your specialists for advice before flying. 4. Using a non-UV light therapy lamp and melatonin can help reduce the severity of jet lag. Consider using apps such as Timeshifter. 5. Make sure you properly prepare your drugs and have enough for your trip. Include extra steroids, if needed, for possible lupus flares and adrenal insufficiency. 6. This section includes a long list of practical information. Highlight all areas that apply to you and organize them into a checklist to simplify their use. |
For more in-depth information on Safe Travel With Lupus: What You Need To Know:
Read more in The Lupus Encyclopedia, edition 2
Look up your symptoms, conditions, and medications in the Index of The Lupus Encyclopedia
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