Lupus Encyclopedia

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?

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Share your experience.
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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. 
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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