With lupus, your immune system attacks healthy tissues by mistake, causing inflammation. Corticosteroids are medications that suppress your immune system to calm the inflammation.
Corticosteroids, sometimes called simply “steroids,” usually work quickly to relieve pain, rashes, and swelling caused by lupus. But they have many possible side effects. Some can be serious and long-term.
Your doctor will usually try other things first. They’ll also try to keep you on steroids only for short periods of time. You’ll only get high doses of them if your lupus is very serious and hard to control with other treatments.
Can You Manage the Side Effects of Steroids?
The side effects of corticosteroids are generally worse if you take a higher dose or use steroids for longer periods.
You can take steps to manage most side effects of steroids.
Perhaps the most important one is not to smoke. Smoking, steroids, and lupus are a dangerous combination. Among other things, smoking can seriously increase your risk of:
- Heart problems
- Infection
- Osteoporosis
- Autoimmune conditions (including rheumatoid arthritis, multiple sclerosis, and lupus itself)
Smoking also magnifies many side effects caused by corticosteroids.
Side Effects That Affect Your Appearance
The side effects of steroids fall into several categories. Those that affect your appearance include:
- Acne, especially on the face, chest, or back. This can be caused by different things. An overgrowth of yeast can also cause a rash that looks like acne but is treated differently.
- Weight gain. Your appetite can increase when you take steroids. You may also retain more fluid. Almost all people taking steroids will gain weight. Some will also see a change in the shape of their face and a redistribution of body fat.
- Bruising easily. This happens because steroids can cause your skin to get thinner and make less collagen. It’s fairly common, especially in children, older people, and women.
- Excessive hair growth. This can be hirsutism, when excess hair appears in expected areas such as the chin or underarms, or hypertrichosis, which causes fine, short hair or “peach fuzz” to grow in unusual spots like your stomach, arms, or legs.
Here are some ways to manage the effects on your appearance:
- Topical creams are often effective against acne. Use gentle soaps and simple cosmetic products that are free of the preservative paraben. Wash your face every night before bed and change your pillowcases often. Talk to your doctor if these things don't work. You may need prescription antibiotics or other treatments for yeast.
- To counteract weight gain, stick to a healthy diet and stay active. But don’t stress too much. Remember that your weight will be easier to manage once you stop taking steroids.
- To treat bruises, remember RICE: Rest, Ice, Compress, and Elevate. Arnica gel or witch hazel may also soothe a bruise. Talk with your doctor about supplements. Some, like vitamin A, may help prevent bruises, but others can make them worse.
- Some products you apply to your skin can slow excessive hair growth. Keep in mind that these take 6-8 weeks to work, and excess hair usually goes away after you stop taking steroids. Laser therapy and electrolysis have longer-lasting results, but they can be painful and expensive. Shaving, bleaching, waxing, plucking, or using depilatories are easy, cheap options. Just take care to avoid damaging skin. Test all products on a small patch of skin first.
Psychological Side Effects
Corticosteroids affect your body’s hormones. They reduce serotonin, which regulates your mood, sleep, and how you handle pain. They also increase norepinephrine and GABA, causing overstimulation of your nervous system. This can lead to:
- Irritability
- Agitation
- Psychosis
- Mood swings
- Trouble sleeping
- A lower sex drive
The higher your dose, the worse these effects will be. Usually, they get better once you stop taking the medication.
To manage psychological effects:
- Take your medications in the morning to reduce insomnia.
- Talk to your doctor about seeing a mental health specialist such as a therapist.
- Don’t focus only on your physical health. Your mental health is just as important. If steroids are worsening your feelings of worry, sadness, or other psychological symptoms, your doctor could lower your corticosteroid dose or switch to a different treatment.
Changes That Affect Your Body’s Health
Side effects that affect your physical health may include:
- Stomach irritation or ulcers. Some researchers think this happens due to an increase in stomach acid. Most researchers agree the risk is low unless you’re also taking aspirin or NSAIDs such as ibuprofen or naproxen sodium.
- Irregular or heavy periods due to the disturbance of your hormone levels. If you’re breastfeeding, you might make less milk.
- Low potassium. Some corticosteroids can increase how much potassium your kidneys get rid of, causing levels in your blood to drop. Your doctor may recommend supplements.
- High cholesterol and triglyceride levels. This is often caused by an imbalance of fat production by your liver. It usually improves when you stop taking steroids.
- High blood pressure. This can be caused by the buildup of cholesterol in your arteries in the long term and in the short term because your body retains fluid when you take steroids.
- Fluid retention and swelling.
- Steroid-induced diabetes (high blood sugar). This is common, and it happens because the medication hampers the insulin in your blood. If you already have diabetes, steroids can make it worse.
- Suppressed growth in children. Steroids can stunt hormones that your body needs to grow. They may also keep your body from absorbing enough calcium.
To manage these changes:
- Don’t drink much alcohol. It can irritate your stomach further. And combining it with some corticosteroids can damage your liver.
- Take medications with food and antacids to reduce stomach irritation.
- To prevent diabetes and heart problems, follow a healthy diet while taking corticosteroids. In general, eat lots of fruits and vegetables, especially leafy greens. Stick to lean meats like fish. Eat healthy fats like avocados, olive oil, and nuts. Limit salt and sugar, and choose whole grains. Avoid processed and fast food.
- Stay active. Exercise can protect against heart problems and diabetes. It’s also an important way to manage the pain and fatigue that autoimmune conditions like lupus can cause.
- Keep acetaminophen on hand to ease period pain. Don’t take ibuprofen, aspirin, or naproxen sodium without asking your doctor. Tell your doctor if you have serious pain, very heavy bleeding, nausea or vomiting, or a high fever with your period.
- If you’re breastfeeding, keep extra milk or formula on hand.
Long-Term Side Effects
Some long-lasting side effects that corticosteroid use can lead to include:
- Osteoporosis. Steroids act directly on the cells that make new bone and break down old bone. This causes less bone to be made and more bone to be broken down, which can lead to fractures. This can happen fairly quickly after you start taking the medication, sometimes even at low doses. Your doctor may give you other treatments to minimize bone loss while you’re on steroids.
- Death of bone tissue due to poor blood supply. This usually only happens with long-term steroid use and high doses. The exact cause is unknown.
- Cataracts or glaucoma. You may need to have surgery to remove cataracts. Steroids can also worsen glaucoma if you already have it.
- Muscle weakness. This is common, but it's more likely at higher doses. It can result from low potassium and calcium levels and reduced muscle proteins caused by steroid activity in the body. It’s reversible and doesn’t usually hurt.
- Narrowing of blood vessels due to cholesterol buildup.
- Thinning of skin
- Weight gain
- Pregnancy complications like preeclampsia. Check in regularly with your doctor if you’re pregnant and taking steroids.
To manage long-term side effects:
- Choose foods high in calcium and vitamin D, including dairy, tofu, green vegetables, sauerkraut, cabbage, soybeans, rutabagas, dried beans, and salmon.
- Exercise to avoid muscle weakness.
- Bone death isn’t common at lower doses, but it is very painful. If you have a lot of pain, talk with your doctor to catch it early.
- Take supplements as directed by your doctor. This might include fish oil for its anti-inflammatory properties and calcium and vitamin D to prevent osteoporosis.
Reducing Your Risk of Infection
Lupus itself affects your immune system and can make it less effective at fighting off invaders. Paired with immune-suppressing medications like steroids, this can be a dangerous combination.
People on steroid doses higher than about 10 milligrams per day are okay short term but long term may carry a significant risk of infections. These can be mild, but they can also be serious. That’s partly because your body doesn’t show the usual symptoms right away since the steroids are suppressing your immune system and slowing your inflammatory response. This lets pathogens take hold more easily. It can also take longer to recover.
These infections include viral ones such as colds and the flu, but also “opportunistic” bacterial infections you can get after a urinary tract infection, strep throat, thrush, or bout of pneumonia. Minor cuts and sores can also lead to infection if you don’t watch them closely.
If you have lupus and are on steroids, your doctor may prescribe daily low-dose antibiotics to prevent bacterial infections.
Take these steps to minimize your risk:
- Practice good hygiene. Wash your hands often, shower with gentle soap, and pay close attention to injuries on your skin.
- Get your recommended vaccines, especially for respiratory infections like the flu. But avoid live vaccines like those for polio and shingles. Ask your doctor which ones you need.
- Talk with your dentist about taking preventative antibiotics before you get dental work or surgery.
- Lupus flares can share symptoms with infections. Talk with your doctor anytime you have a flare to make sure it’s not actually an infection, especially if you have a fever.
- Avoid contact with anyone who has cold symptoms, even mild ones.
- Remember your healthy diet, good sleep habits, and stress management. Your body can’t effectively fight off infection if your basic health needs aren’t met.
