The Lupus Secrets

 by Donald Thomas, MD

Learn to incorporate each into your lifestyle.

• Print this out
• Read each “secret”
• Highlight everything you are not doing regularly or did not know was important to do
• Start to incorporate each into your life for the rest of your life
• Share with others so they can learn to control their lupus better

Also, download my free handouts with lots of great, practical advice

Avoid These if You Have Lupus

• Avoid sulfa antibiotics (Septra and Bactrim); add to your allergy list – they can cause bad lupus flares
• Avoid alfalfa and mung bean sprouts: Contain L-canavanine (Increases immune system and lupus activity).
• Do not take the herb Echinacea (or any supplement that “boosts” the immune system): This can cause lupus flares, even severe flares. The Johns Hopkins Lupus Center had to treat several patients with chemotherapy for severe lupus nephritis after patients took echinacea supplements.

Things to Reduce Lupus Inflammation

• Maintain good dental health:  Brush twice daily, floss daily, immediately have gingivitis and periodontal disease treated. Studies show that bad bacteria of gingivitis/periodontal disease can flare lupus. A study showed that having periodontal disease treated along with usual lupus care resulted in better lupus disease control.

The 3 Most Important Drugs For Lupus: Hydroxychloroquine, Vitamin D, Sunscreen

• Take your medications regularly. Learn how to not miss doses. Consider a pharmacy service such as PillPack, many of my lupus patients use it, and it makes it markedly easier to not forget to take medicines. I use it myself. Taking your medicines sounds obvious, yet studies show (repeatedly) that most lupus patients do not take their medications regularly enough to benefit from them (especially hydroxychloroquine). Poor adherence is the number one cause of lupus patients flaring, not achieving remission, requiring hospitalization, developing organ damage, and dying prematurely. You can prevent these.

Hydroxychloroquine: “The only drug proven to prolong survival in lupus patients”

• All lupus patients should be on an anti-malarial like hydroxychloroquine (Plaquenil) or chloroquine. The benefits of Antimalarial Medicines: Increase life span, Decrease internal organ involvement, Decrease risk of worsening of lupus, Decreases heart attacks and strokes from lupus, Decreases doses needed of steroids, Better control of severe disease when used with stronger medicines, Decreases blood clots, Decreases neonatal lupus births, Improves chances of a successful pregnancy, Decreases risk of getting diabetes.
• Ask your rheumatologist to measure your whole blood Plaquenil drug level regularly to ensure it is not too high or too low. It is available from LabCorp. Make sure to do the lab test before you take your medicine on the day of your labs (it is most accurate this way). Our goal is a level of 750 – 1200 ng/mL. For hard-to-control lupus, I strive for a level of 1000 – 1200 ng/mL. Levels greater than 1000 are associated with a four-fold lower risk of flares, and a level of less than 1200 has a markedly lower risk for any eye problems.

Vitamin D: One of the safest lupus drugs, yet one of the most common drugs patients forget taking

• Take a vitamin D supplement if your level is less than 40 ng/mL. Studies show this reduces lupus disease activity. Goal level: A Johns Hopkins study suggests you should be on a vitamin D supplement if your level is less than 40 ng/mL. Your goal is to increase your level by 20 ng/lM or better. If less than 40, tell your doctor you’d like to take a vitamin D supplement). After starting on a vitamin D supplement, have it rechecked after 3 months, if it is not around 40, then increase your dose.  Repeat this step and adjust the dose every 3 months until your level increases by at least 20 ng/mL above your baseline level.

Sunscreen: I include it in my patients’ medication lists

• Use sunscreen every day, and abide by ultraviolet light protection (see UV Protection Handout). UV light, even in small doses from indoor light bulbs, damage skin cells. The inner contents (like DNA) come into contact with lupus antibodies (like anti-DNA) that think your own cells are foreign invaders. The antibodies attach to these contents, float through your blood and lymph system, lodge in organs (like the kidneys), where they can cause inflammation and damage (like lupus nephritis).

Supplements that may help lupus

Omega-3

• Consider taking omega-3 fatty acid supplements: A 2024 multicenter study showed that SLE patients with high disease activity who took 4 grams of concentrated Krill oil daily had less disease activity at 4, 8, and 16 months compared to those who took placebo. All patients taking krill had significant increases in their body levels of omega-3 fatty acids, which could potentially help reduce heart attacks and strokes. There were no significant side effects. Note, this is a change from my previous recommendation of not taking omega-3 fatty acid supplements. Since this was found to be effective and safe by numerous lupus centers, this is the type of research we have been waiting for.
• HOWEVER: Ask your doctor before taking any supplement. Omega-3 fatty acids can thin out the blood (needs stopped before surgery), may reduce blood pressure, and may interact with some lupus medications like tacrolimus. 

Turmeric and ginger

• Consider turmeric (curcumin) or ginger in food or a supplement (make sure to ask your doctor first, not all doctors recommend turmeric). Turmeric can have interactions with medications and cause lab abnormalities. Only use under a rheumatologist’s direction.

NAC

• Consider taking the supplement N-acetylcysteine (NAC): Several studies suggest benefits in lupus with few side effects. Start off with 600 mg three times a day and slowly increase as tolerated up to a maximum dose of 1800 mg three times a day. If you get stomach upset or headaches or rash, lower your dose to the maximum tolerable dose. Ask your doctor before taking NAC to ensure it is safe for you and doesn’t have interactions with your other medicines (such as with blood thinners).

DHEA

• Consider taking DHEA if approved by your rheumatologist. It can potentially help mild lupus symptoms, reduce steroids, and improve bone density. If you take it, ask for a compounded form of DHEA to ensure high quality. The usual dose is 200 mg a day if approved by your rheumatologist (ask your doc before taking this). I start at a lower dose and slowly increase it as tolerated and as needed.  Potential side effects: Acne, hair growth Only get from a compounding pharmacist (e.g. Village Green Apothecary, Bethesda)

Preventing Other Complications of Lupus

• Ask your rheumatologist to measure your whole blood Plaquenil drug level regularly to ensure it is not too high or too low. It is available from LabCorp. Make sure to do the lab test before you take your medicine on the day of your labs (it is most accurate this way). Our goal is a level of 750 – 1200 ng/mL. For hard-to-control lupus, I strive for a level of 1000 – 1200 ng/mL. Levels greater than 1000 are associated with a four-fold lower risk of flares, and a level of less than 1200 has a markedly lower risk for any eye problems.
• Preventing eye side effects from Plaquenil:  Get a Visual Field 10-2 plus an SD-OCT yearly. FAF or mfERG can be substituted if the previous two are not available. If Asian, you also need a VF 24-2 or VF 30-2 (i.e. three tests per year) Ask your doctor to do a whole blood hydroxychloroquine drug level every visit. Levels lower than 1200 ng/mL are markedly less likely to cause any eye problems.
• If you are on any stomach acid–lowering medicines, consider taking calcium citrate daily

Preventing Heart Attacks, Blood Clots, and Strokes: the Top Killers in Lupus

• Take aspirin 81 mg a day (ask your doctor if this is OK first) to help reduce the risk of heart attacks and strokes.
• Do not smoke cigarettes. Smoking causes lupus to be more active, keeps hydroxychloroquine from working, increases strokes and heart attacks (which are the most common causes of death in lupus patients), increases the risk for lung cancer (which occurs more commonly in lupus patients), and causes broken bones from osteoporosis (Call 1-800-QUIT-NOW or go to www.smokefree.gov)
• All SLE patients should have a home blood pressure monitor. Your home BP goal is less than 125/80. 130/80 and higher is called hypertension. 120/80 is considered elevated blood pressure. Home blood pressure readings are considered to be more accurate and useful than what we get in the doctor’s office. Measure your pressure 3 times before all doctor visits and take the numbers in to your doctor. If higher than 125/80, ask for assistance (such as increasing your blood pressure medications) to get better control and help prevent heart attacks and strokes. If you are elderly or get too dizzy at these numbers, your doctor may elect to keep your blood pressure a little higher.

Important information about cholesterol and lupus

• High HDL is not necessarily good cholesterol in lupus. We are unable to measure pro-inflammatory and oxidized HDL yet outside of research
  Pro-inflammatory HDL and oxidized HDL occurs in 45% of SLE patients: it causes heart attacks and strokes.
  Regular exercise is the best way to decrease this bad type of HDL.
• Maintain normal lipoprotein a, LDL and total cholesterol levels (ask for a statin if high). Ask your doctor to check your lipoprotein-a level. This is a bad cholesterol that sticks to the sides of arteries and can clog them. High levels are a genetic problem and there are treatments to reduce it (niacin and monoclonal antibody treatments). This is a new recommendation from the Harvard combined Rheumatology-Cardiology Clinic.

Prevent Infections: the 2nd most common cause of death in lupus

• Get the flu (influenza) shot and COVID vaccine every Fall.
• Get the RSV vaccine. RSV causes severe pneumonia and kills 10,000 immunosuppressed and older Americans yearly.
• Get pneumonia (Prevnar and Pneumovax) and shingles (Zostavax and Shingrix) vaccines: Ask your rheumatologist if and when.
• If you have bacteria in your urine or get urinary tract infections, consider taking a mannose combined with cranberry supplement daily to prevent this. A 2020 study showed that SLE women with bacteria in the urine had more lupus flares and higher disease activity. 

Prevent Cancer: the 4th most common cause of death in lupus

• Consider getting yearly skin exams from a dermatologist if you are on an immunosuppressant: Non-melanoma skin cancers (basal cell and squamous cell) may be more common in people who take some immunosuppressants (such as methotrexate, mycophenolate, JAK inhibitors, cyclosporin, and tacrolimus). Consider doing this especially if you have other risk factors for skin cancer such as having fair skin, having severe sunburns ever during your life, long periods of sun exposure during your life, or have a family history of skin cancer.
• Keep up on cancer screenings: Studies show that people with lupus get less cancer screenings. Cancer = 4th most common cause of death. Screening tests: Colonoscopy, Mammogram, Pap smear, Yearly low dose chest CT if smoker.
• Get the Gardasil vaccine (protection from human papilloma virus related cancer; consider it as cancer prevention therapy. Everyone 9 yo – 45 yo (Most effective before sexual activity and Can prevent additional infections in those who have already been infected). HPV cancers are more common in lupus: Anal, Cervical, Vaginal and vulvar, Penile, Throat, and Nonmelanoma skin cancers.

Managing Problems and Complications of Lupus

• If you are fatigued and tired: do everything in the Fatigue Management and Sleep Hygiene handouts
• If you have trouble with memory and concentration: Do everything in the Memory Improvement handout
• Tell your doctor if you are down in the dumps, have problems with memory, concentration, have severe fatigue, trouble sleeping, loss of interest in enjoyable activities, ache all over. You could have: Fibromyalgia, Depression, Anxiety Disorder. Take the home self-diagnosis tests. Show the results to your doctor if you score high.
• Do you have dryness? Dry eyes, dry mouth; Itchy, dry itchy skin, dry vaginal area: tell your rheumatologist, you could have Sjogren’s along with your lupus. 30% of patients have Sjögren’s Disease: especially possible if +SSA/SSB antibodies. Go to www.Sjogrens.org to learn more
• If you get a fever: Call and see a doctor ASAP to make sure it is not an infection. The most dangerous possible cause = Infection
  Call and see a doctor immediately (Primary care physician, Urgent care centers, or Emergency room). Don’t assume it is your lupus or assume it may be a “mild” infection that will go away.
• If you take steroids (such as prednisone), make sure you are taking a medicine to prevent osteoporosis (if appropriate). Get enough calcium from food or additional supplements — check with your doctor. Also, consider wearing a medical alert bracelet. Long term steroid use can cause adrenal insufficiency, requiring you to take extra steroids during times of stress such as infections and trauma.

How to have a Successful Pregnancy in Lupus

• Do not get pregnant until cleared by your rheumatologist. It is important to have good disease control for 6 months prior to conceiving, plus medications may need to be stopped, adjusted or changed in preparation for surgery.
• If you get pregnant, see your rheumatologist more often and consider seeing a high-risk obstetrician. Make sure to read my online article about the secrets on having a successful pregnancy when you have lupus. It is full of great tips and important advice.
• If you are anti-SSA positive and get pregnant, alert your OB/GYN: you need fetal heart monitoring beginning at sixteen weeks of pregnancy

Important Healthy Wellness Habits for Lupus

• Get 8 or more hours of good quality sleep each night: If having trouble, do everything in the Sleep Hygiene handout. Also see my sleep and lupus blog post.
• Perform moderate aerobic exercise 150 minutes/week; strengthening exercises 2 days/week: Exercise should be considered a free drug. If you unsure how to exercise safely with your medical condition, ask your doctor to send you to physical therapy so they can design an effective and safe exercise regimen. Exercise has many benefits including reducing heart attacks and strokes, improves the body’s response to stress, helping reduce fat which can help reduce inflammation, improves sleep quality, improves energy levels, increases bone density, increases ones self image, increases muscle mass and therefore the body uses more calories which can help with weight reduction (if you are over weight).

Diet and Lupus

• Eat an anti-inflammatory diet. Use more olive oil (Reduces bad omega-6 fatty acids); a study using 1 tablespoon per day showed benefits in lupus
  Consider eating “The Mediterranean Diet”.
• Consider foods that may improve your gut microbiome (“leaky gut”): resistant starches (overnight oatmeal, plantains, lentils, whole grains) and probiotic foods (fermented sauerkraut, kimchee, yogurt, etc).
• Eat a diet rich in Omega-3 fatty acids: Cold water fatty fish (salmon, sardines, tuna, mackerel), Walnuts, Flax seed (Decreases inflammation, Decreases cardiovascular disease, Improves dry eyes from Sjögren’s syndrome).
• Garlic is fine in food. There is no evidence that garlic is bad for lupus. Some integrative medicine rheumatologists recommend including garlic as part of an anti-inflammatory diet. Ignore some of the misinformation on the internet, to include outdated information from important medical centers (they do not have the man power to comb all their old information and remove incorrect information).

Stress and Lupus

• Work on decreasing stress (see Stress Reduction handout): Stress increases lupus flares. Lupus is more likely to occur in people who have been exposed to high levels of stress.
• Spend at least 5 minutes daily practicing mindfulness (such as breathing exercises)

Important General Health Care Practices

• Keep a personal record of: Lab results, biopsy results, X-rays, doctor notes. Give them to all your doctors.
• Every time you see a specialist: Ask them to send your rheumatologist a note, even if you don’t think it is important. Lupus can affect every part of the body. Take matters into your own hands and get copies of all notes and results and give them to your rheumatologist. I have had patients develop severe problems from lupus that I was never told about and I could have prevented their complications (such as heart failure from lupus myocarditis).
• See a rheumatologist or other lupus specialist regularly, commonly every three months, even if you feel great. Kidney inflammation occurs in around 50% of SLE patients and doctors can identify it at early stages (by way of a urine sample) when it is easy to treat. It causes no symptoms until it becomes severe.
• Take an up-to-date medication list, that includes your drug intolerance list, or a bag of all your medicines to every doctor’s visit. Carry these lists with you at all times

Last and Certainly Not Least

• Learn as much as you can about lupus. Remember: “Knowledge is Power”
• Read “The Lupus Encyclopedia: A Comprehensive Guide for Patients and Health Care Providers, edition 2”
• Follow Dr. Thomas’ practical advice articles about lupus at https:///www.lupusencyclopedia.com
• Follow him on X (Twitter) @lupuscyclopedia
• Follow his educational Facebook page at www.facebook.com/LupusEncyclopedia
• Join your local lupus patient advocacy group (such as the Lupus LA, Kaleidoscope Fighting Lupus, More Than Lupus, Lupus Foundation of America, EuroLupus, Lupus UK)
• Go to www.thelupusinitiative.org
• Read other patient education books such as Dan Wallace’s “The Lupus Book”

• Tell yourself it is going to be a good day every day and that there is a lot in your power to do well.

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FREE Downloadable Documents

Fatigue Management 

Sleep Hygiene

UV Protection

Memory Improvement

Stress Reduction

Fibromyalgia Diagnosis Test

Depression Home Test

Anxiety Disorder Home Test