The Lupus Secrets
The Lupus Secrets
- Avoid sulfa antibiotics (Septra and Bactrim); add to your allergy list – they can cause bad lupus flares
- Keep a personal record of: Lab results, biopsy results, X-rays, doctor notes
- 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.
- 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 aspirin 81 mg a day (ask your doctor if this is OK first)
- If you are fatigued and tired: do everything in the Fatigue Management and Sleep Hygiene handouts
- Get 8 or more hours of good quality sleep each night: If having trouble, do everything in the Sleep Hygiene handout
- 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 Syndrome: especially possible if +SSA/SSB antibodies.
Go to www.Sjogrens.org to learn more
- All SLE patients should have a home blood pressure monitor. Your BP goal is <120/80. 130/80 and higher is called hypertension.
NOTE: This is the newest recommendation from the American College of Cardiology
If you are elderly or get too dizzy at these numbers, your doctor may elect to keep your blood pressure a little higher
120/80 is now considered to be “high blood pressure” and NOT normal
- Maintain normal LDL and total cholesterol levels (ask for a statin if high)
- 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 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.
- 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)
- Perform moderate aerobic exercise 150 minutes/week; strengthening exercises 2 days/week
Decreases heart attacks and strokes, Decrease the bad HDL that causes inflammation
Decreases fat and excess weight, Improves sleep, Improves sense of well-being
Decreases pain levels and stress, Lowers symptoms of fibromyalgia and depression
Dance classes especially felt to be good for memory problems
- Maintain normal body weight.
- If you get a fever: Call and see a doctor ASAP to make sure it is not an infection.
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
- Get the flu (influenza) shot every Fall or late summer
- 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 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
- 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.
- If you are on any stomach acid–lowering medicines, consider taking calcium citrate daily
- Take a vitamin D supplement if your level is less than 40 ng/mL
Goal level: Johns Hopkins study suggests you should be on a vitamin D supplement if your level is less than 40 ng/mL. Your goal level should be around 40 or higher (know your number! 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 dose every 3 months until the target of “around 40” or higher is achieved.
- 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
- If you take steroids regularly, 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.
- Take your medications regularly. Learn how to not miss doses
Large percentage of patients don’t take their Plaquenil regularly
Noncompliance = #1 reason for lupus flares and medicines “not working”
- 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
- All patients should be on an anti-malarial like hydroxychloroquine (Plaquenil) or chloroquine
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 Plaquenil drug level regularly to ensure it is not too high or too low
- Preventing eye side effects from Plaquenil (American Academy of Ophthalmology)
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)
- Use sunscreen every day, and abide by ultraviolet light protection (see UV Protection Handout)
- Eat a diet healthy for lupus
Avoid alfalfa and mung bean sprouts: Contain L-canavanine (Increases immune system and lupus activity)
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)
Use diet… NOT pills; studies using omega-3 supplements, fish oil capsules, etc show no health benefits
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).
Consider turmeric (curcumin) 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 rheumatologist’s direction
- 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
- Work on decreasing stress (see Stress Reduction handout)
- Spend at least 5 minutes daily practicing mindfulness (such as breathing exercises)
- Do not take the herb Echinacea (or any supplement that “boosts” the immune system)
- Consider taking DHEA if approved by your rheumatologist
200 mg a day if approved by your rheumatologist (ask your doc before taking this)
May help lupus by Improving bone density, Decreasing steroid doses, Help with minor lupus problems
Potential side effects: Acne, hair growth
Only get from a compounding pharmacist (e.g. Village Green Apothecary, Bethesda)
- Do not get pregnant until cleared by your rheumatologist
- If you get pregnant, see your rheumatologist more often and consider seeing a high-risk obstetrician
- Every day tell yourself it is going to be a good day, that there is a lot in your power to do well. Remember: Knowledge is power!
- If you are anti-SSA positive and get pregnant, alert your OB/GYN: you need fetal heart monitoring beginning at sixteen weeks of pregnancy
- Learn as much as you can about lupus:
- Read “The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families”
Follow Dr. Thomas’ practical advice articles about lupus at https:///www.lupusencyclopedia.com
Or follow his educational Facebook page at www.facebook.com/LupusEncyclopedia
Join your local lupus patient advocacy group (such as the 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, that there is a lot in your power to do well. Remember: Knowledge is power!