Is it important to take vitamin D if you have lupus?
produced by Kelli Roseta's "More Than Lupus"
The mission of the More Than Lupus Foundation is to provide programs and support for those living with lupus, advocate for their needs, and collaborate with other government and lupus organizations to strive toward improving quality of life, and ultimately finding a cure.
AuthorDon Thomas, MD author of "The Lupus Encyclopedia" and "The Lupus Secrets"
References: Under chapter 38
Lupus Secrets: List sulfa antibiotics in your allergy list if you have lupus
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.
Learn and abide by the Lupus Secrets to live a healthier, longer life with SLE
This is my first blog post (as I stated I'd do in my 1st post) with one of my Lupus Secrets. It is such an important one! I will discuss the other "Secrets" in my blog in the future.
PLEASE SHARE THIS POST WITH OTHER LUPUS PATIENTS ... HELP GET THE WORD OUT!
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.
Don Thomas, MD
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
What is your experience with sulfa antibiotics?
Please click "Comments" just below the main title or if you are on the main post page, comment at "LEAVE A REPLY" below the post.
The aiSLE DX Flare Risk Index test
The Lupus Foundation of America, in its continuous quest to advocate for better care of lupus patients, just announced a new laboratory test that can help people who have systemic lupus erythematosus (SLE).
The test is called the aiSLE DX Flare Risk Index, produced by Progentec Diagnostics, a company that specializing in lupus. This is the first test in their "pipeline" (the yellow "01" part of the diagram above) of lab tests, designed to modernize and improve the care of SLE patients. Progentec had a press release this week about the lab test... read it here
The test measures numerous molecules of the immune system called cytokines and chemokines. Some of these cytokines increase immune system activity in SLE, while others decrease it. Studies have shown (at the Mayo Clinic and OMRF) that before lupus flares, we can predict the chances of it occurring beforehand. This is exciting. Up to now, whenever we get labs on our lupus patients, it tells us how patients are doing at this moment. I like the way that Dr. Chaim Putterman (a lupologist) put it:
"“The management of lupus symptoms has traditionally involved a regimen of reactive protocols. A test that assesses the likely risk of the onset of a flare is one of the first proactive measures available to the rheumatological community. The empirical data derived from such a test potentially has tremendous value in helping devise the right treatment and care for lupus patients.”
- Chaim Putterman, MD, Professor of Medicine and Microbiology & Immunology at the Albert Einstein College of Medicine
LDaniele DeFreese working in Progentec's Oklahoma City-based laboratory. She is the laboratory technician and manager
I've been using the test on my patients now for a few weeks. I love it. When it comes back with a negative number result, telling me that patient has a very low risk of flaring ... it is music to my ears, and good news for them. If the test shows an increased risk for flaring, then I want that patient to ensure they are doing every thing on my - Lupus Secrets - and I'd make sure that the current treatment is maximized. I'd also check their labs more often during the next 12 -16 weeks.
Under a dozen rheumatologists have been using it up to now, but this week it has gone commercial. Rheumatologists can go to the Progentec website to sign up for the test so they can offer them to their patients.
Share any comments below. If you have lupus, what do you think of new tests coming out such as this?
SHARE the good news that the medical care of lupus patients is advancing!
Don Thomas, MD
Disclosure: I am on the Scientific Advisory Board of Progentec. I strongly believe in their mission and dedication to lupus patients.
How do we identify and treat flares in people who have systemic lupus erythematosus?
There are things that people can do to decrease them from occurring.
There are things we can do to get them under control when they do occur.
The YouTube video below is the perspective of two rheumatologists who treat lots of lupus patients. They also hint about new lab tests that are just around the corner that can help predict lupus flares before they even happen. The immune system of lupus patients becomes more active before the person knows that a flare is going on.
Also, make sure to click on the Lupus Foundation's Flare Plan site and download their flare plan as a practical way to monitor and report flares to your physician. Have a plan in place before you flare.
Comment below about how you prevent lupus flares.
What symptoms do you have during a flare?
What have you found to be effective in getting your flares under control?
If you have had SLE for a long time, what do you wish you would have done differently after first diagnosed to help prevent flares?
- Don Thomas, MD
Do Flu Shots Cause Lupus Flares?
Question of the day: Dr. Thomas, I have lupus and was told by another lupus patient that she gets a flare when she gets a flu shot. Do flu shots cause lupus flares? - JP
ANSWER: "No and Yes; in that order"
Fortunately, the vast majority of systemic lupus erythematosus (SLE) patients do not get a flare after getting the flu shot. A recent study showed that only 32 SLE patients out of 1966 (1.6%) who got the flu shot (influenza vaccine) had flares from their SLE, and all were mild. I have never had a patient get a severe flare from the flu shot over 30 years. I had one severe flare from Pneumovax, though.
Now the really interesting thing about this study is as follows... it would be very easy to conclude "the flu shot must cause flares in 1.6% of SLE patients." However, that is not true. Imagine studying 1966 SLE patients even for just a very short period of time. I find it amazing that only 32 out of 1966 would flare. You'd expect more of them to flare during the study period simply because that is what lupus likes to do.
Compared to healthy controls, they responded very well to the vaccine as far as it protecting them from the flu.
It is flu season. Please get your flu shot. Especially with COVID-19, we do not want a one-two punch!
NOTE: The Centers for Disease Control recommends getting the flu shot BEFORE the end of October.
(Many people misinterpret this as they should get it in October). Their only warning about this is that elderly vaccine recipients may have the vaccine response be a little weaker at the end of the flu season if they get it in July or August. Otherwise, it is best to get it as soon as it is available to help decrease community spread.
Please SHARE my post with others.
Click the COMMENTS button above regarding your experience with the flu shot when you have lupus. Would love to hear from people who have had no problems at all and those who have.
- by Don Thomas, MD, FACP, FACR
DONALD THOMAS, MD