Lupus Encyclopedia

​- Maintain a regular sleep schedule; get up and go to bed the same time daily even on non-work days and holidays.
- Reduce stress in your life.
- Get exposure to light first thing in the morning to set your biological clock. Consider using a non-UV source of light exposure such as the Philips goLITE or the Miroco non-UV light.
- Exercise daily; mornings and afternoons are best. Don’t exercise right before bedtime.
- Avoid naps late in the afternoon or evening.
- Finish eating two to three hours before bed; a light snack is fine, but avoid foods containing sugar as it can stimulate the mind and interfere with falling asleep.
- Limit fluids before bed to keep from getting up to urinate throughout the night.
- Avoid caffeine six hours before bed.
- Do not smoke; if you do, don’t smoke for two hours before bed; nicotine is a stimulant.
- Avoid alcohol two to five hours before bed; alcohol disrupts the sleep cycle.
- Avoid medicines that are stimulating (ask your doctor).
- Avoid stimulating mind activities for a few hours before bed (reading technical articles, listing tasks to do, trouble-shooting, paying bills, etc.).
- Have a hot bath one to two hours before bed; it raises your body temperature and you will get sleepy as your temperature decreases again afterward.
- Keep indoor lighting low for a few hours before bed.
- Establish a regular, relaxing bedtime regimen (aroma therapy, drink warm milk, read, listen to soft music, meditate, pray, do relaxation/breathing exercises).
- Ensure your sleeping environment is quiet and comfortable (comfortable mattress and pillows; white noise like a fan; pleasant, light smells).
- If pets ever 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 go to sleep within fifteen to twenty minutes in bed, go to another room and read something boring under low light, meditate, pray, listen to soft music, or do relaxation/breathing exercises until sleepy.
- If you have dry mouth problems, use a mouth lubricant such as Biotene Mouth Spray before you go to bed.

This presentation (link below) is published on YouTube by lupus warrior Kelli Roseta of "More Than Lupus"
Moderator and questions are asked by lupus warrior Molly McCabe
Lupus questions about "The Lupus Secrets" and living with lupus are answered by Don Thomas, MD

​Topics include:
​
Hydroxychloroquine (Plaquenil) dosing, safety, how to avoid eye problems
Belimumab (Benlysta) safety and helpfulness for lupus
How long does it take for Benlysta to work?
Which lupus patients are the best candidates for Benlysta treatment
Genetics and epigenetics that can predispose people to getting lupus
Why lupus occurs more often in people of color (African descent, Hispanic, Asian, indigenous peoples)
The treatment of lupus and rheumatoid arthritis overlap, also called rhupus
What is the significance of an antinuclear antibody (ANA) test becoming negative in a lupus patient?
How to ensure that new doctors believe your diagnosis of systemic lupus made by a previous doctor
The use of hormone replacement therapy (estrogen, progesterone) in women after menopause
Steroid usage in lupus. Should it be stopped?

Please click on "Comments" above and share with us your thoughts on the topics and answers.
Share your experience.
Do you have any questions for Dr. Thomas?

Lupus patients are more likely to have allergies to antibiotics

​Many systemic lupus erythematosus (SLE) patients report numerous drug allergies. However, studies do not show an increased amount of allergies than non-lupus patients (other than antibiotics). SLE patients have higher rates of allergies and intolerances to penicillins, cephalosporins, sulfonamides, and the antibiotic erythromycin. The most important antibiotic intolerance is that of sulfonamide (often called “sulfa”) antibiotics. This most commonly refers to the antibiotic trimethoprim-sulfamethoxazole (Bactrim and Septra).

Sulfur versus sulfonamides versus other sulfa drugs and lupus

The element called sulfur exists in all of us, so none of us are allergic to sulfur. Many different molecules contain sulfur to include sulfates, sulfites, and sulfonamides. Lupus patients have an increased risk of antibiotic sulfonamides (specifically Bactrim, trimethoprim-sulfamethoxazole) flaring their lupus. Sulfonamide antibiotics are very different than sulfates, sulfites, and others. These are safe for lupus patients to take. There are some non-antibiotic sulfonamides (furosemide, hydrochlorothiazide, acetazolamide, sulfonylureas used for diabetes, and celecoxib). However, these do not appear to increase lupus flares and are safe for lupus patients to take (unless they just happen to have an allergy to that particular drug). 

Sulfa antibiotics can cause significant lupus flares (list is as an allergy!)

Around one-third of lupus (SLE) patients have reactions to Bactrim, and it can cause lupus flares as well. These reactions are more common in Caucasians, those with low lymphocyte counts (lymphopenia), and anti-SSA positive patients. Still, they can occur in any lupus patient. They especially can cause flares of fever, sun-sensitive rashes, and low blood cell counts. Sometimes these flares can be severe. There are so many other antibiotics now available that sulfonamide antibiotics can usually be avoided in SLE patients. 

I, and most lupus experts, recommend that all lupus patients always carry an up-to-date medication list (similar to the first image, above) and that it also includes an allergy list that includes “sulfa antibiotics.” This can protect you if you ever get sick and end up in the emergency room where it can be hard to remember to tell your entire medical history. While lupus patients are more likely to be intolerant of the antibiotics penicillin, cephalosporins, and erythromycin, these do not typically cause lupus flares, and the vast majority of SLE patients tolerate them well. Therefore, they do not need to be avoided in lupus patients who are not allergic to them.

Background of "The Lupus Secrets":

A long time ago, I realized that most patients and most physicians were not familiar with all the important things that lupus patients can do themselves that improve their health and lives. So, I made a list and called them “The Lupus Secrets" that addresses these important things. I called them "The Lupus Secrets" not because I wanted them to be a secret, but because they appeared to be a secret since most people (and doctors) did not know about all of them.

I regularly update this list as our knowledge of lupus improves. I give this list to all my patients, and encourage them to follow it. Most of my SLE patients are in remission or low disease activity, and I care for over 200 people who have SLE. I attribute my patients’ utilization of “The Lupus Secrets” as an important tool in achieving this goal. Please download a copy. Each recommendation has medical literature to back it up (check out the references below for this "Secret"), though each varies in the strength of evidence. 
​

References:
Petri, M, Allbritton, J. Antibiotic allergy in systemic lupus erythematosus: a case-control study. J Rheumatol 1992; 19: 265–269.​
​Wozniacka A, Sysa-Jedrzejowska A, Robak E, Samochocki Z, Zak-Prelich M. Allergic diseases, drug adverse reactions and total immunoglobulin E levels in lupus erythematosus patients. Mediators Inflamm. 2003;12(2):95-99. doi:10.1080/0962935031000097709