Why include sulfa antibiotic allergies in your lupus medication list?

9/26/2020

Lupus Secrets: List sulfa antibiotics in your allergy list if you have lupus

Lupus medication list with drug allergy list including sulfa and Bactrim antibiotics

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.

Author

Don Thomas, MD
Author of The Lupus Encyclopedia

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

Picture showing a bunch of people holding a sign in the shape of a cloud that says comment on lupus medication list and lupus sulfa allergy

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.

12 Comments

The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families (A Johns Hopkins Press Health Book) Illustrated Edition
by Donald E. Thomas Jr. MD FACP FACR (Author)

The Lupus Encyclopedia is an authoritative compendium that provides detailed explanations of every body system potentially affected by the disease, along with practical advice about coping. People with lupus, their loved ones, caregivers, and medical professionals―all will find here an invaluable resource. Illustrated with photographs, diagrams, and tables, The Lupus Encyclopedia explains symptoms, diagnostic methods, medications and their potential side effects, and when to seek medical attention. Dr. Donald Thomas provides information for women who wish to become pregnant and advises readers about working with a disability, complementary and alternative medicine, infections, cancer, and a host of other topics.

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Cedens

9/27/2020 02:21:20 am

There are no references on your blog post. That's seems very strange as a doctor. Please post references.

Don Thomas, MD

9/27/2020 12:12:49 pm

Cedens: Look at the very bottom of the post below my name. I included references there. They probably were just a little hidden below the post, and I did not notate in the text exactly which parts are referenced. I can't figure out how to do superscripts on this website blog post. Dr. Michelle Petri at the Johns Hopkins Lupus Center especially helped to educate rheumatologists about the importance of sulfa intolerances in lupus patients and the importance of lupus medication lists way back in the early 1990s when I was still a rheumatology fellow. Unfortunately, there are not randomized, controlled trials, however, there never will be. All lupus docs have seen way too many bad reactions to sulfa to even try such a study.

However, I completely agree with you, references are very important.

Thanks for reading my post and I'll make sure to put up helpful, practical posts regularly.

Please share it with others who have lupus and if you have any special post requests, just let me know.

9/27/2020 12:21:36 pm

Also, in the future, I'll make "references" in bold and black font to make it easier to see... thanks for asking about them

Cindy Sanchez

9/29/2020 03:33:40 am

I had back surgery in December and approx 8 days after getting my staples out I became extremely I'll. Fever, chills, my incision had broken open and it was draining. I could barely get out of bed to go to the doctor's office. Turned out I had a MRSA infection and I was prescribed Bactrim. I tolerated it well for the first ten days and then again for the next 10 days. The MRSA infection was being very stubborn and didn't seem to be responding to the antibiotics. I only took two of the next seven day prescription when I broke out in the very worst rash I've ever had. It was literally from my head to my feet, it burned it itched and every bone in my body hurt!
So a trip to the ER for prednisone, benadryl and a lotion for the itching. Life with Lupus!

9/29/2020 08:01:30 pm

Thank you for sharing your story, Cindy. I hope your story will help others with SLE learn to carry around an allergy list that includes Bactrim (sulfa antibiotics) so this does not happen to them. Thanks for reading my post.

Rebecca Davis

9/30/2020 11:55:52 pm

I love your blog posts, but the picture you used at the top listing Vitamin D2 as part of a medication list concerned me. Vitamin D3 is what is recommended for supplementation, due to its bioavailability. As many Lupus patients have low Vitamin D levels, it is important for them to know to supplement with D3, not D2.

10/1/2020 10:11:00 am

Rebecca: I love your question. Oh... vitamin D... one of the most controversial subjects on the internet. I agree, it is such an important medication for most lupus medication lists. Actually either one can be used. It is OK if you are in the vit D3 camp, there are just as many in the vit D2 camp. They both actually achieve the same objectives in SLE patients, improving the immune system. Vitamin D3 has much better bioavailability. This is why we get away with lower doses of it compared to vitamin D2, but it doesn't mean it is any better. Dr. Michelle Petri, in charge of the Lupus Center at Johns Hopkins primarily uses Vitamin D2 in her patients based upon studies such as: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3701725/ . I know Dr. Petri and know she uses the D2 form. Here is paper of hers about SLE management: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6310637/ ... in the vitamin D section, she does not specify vit D3 or D2 since there are studies supporting both. Bottom line is that I do use both in my patients and get good results from both. It is also clear that we need better studies. We need large, excellent randomized controlled trials to number one prove causality of low vitamin D and abnormal immune system function, correcting vitamin D improves SLE function, and look in detail about the effects of vitamin D2 vs vitamin D3 when appropriate doses are used to get the 25-OH vit D to a target of 40 ng/mL.

Thanks so much for reading my posts and commenting. This also reminds me a definite truism in medicine... 50% of what we "know" and teach today will be proven wrong in the future... the question is.. which 50%? (one of Dr. Philip Seu's favorite lines at Johns Hopkins) ... Dr T

TIFFANY LINK

10/18/2020 02:05:51 pm

First time I was prescribed I had no reaction. The second time could have been different because of the UV exposure at the farmer’s market. Started out generally unwell and weak feeling. Then within 30 minutes it escalated to flu like feeling and by the time my parents met me at home to grab my son I was in severe pain all over. I was vomitting in all over body pain. I didn’t have the tongue swelling throat closing allergic reaction most would expect. My body was in chaos. My skin felt like it was on fire yet I had no temperature. My back felt like it was being ripped open. I was doubled over in pain yet needed to lay back gasping for air heaving my chest with rasping gasping breaths. The ER was confused because this isn’t a typical allergic reaction. Benadryl wasn’t touching it. I remember staying overnight with intravenoua steroid doses so large I didn’t recognize myself the next day.

DON THOMAS, MD

10/18/2020 02:08:38 pm

Sorry to hear that Tiffany. Yours is not an unusual story at all. Thanks for sharing. Hopefully, others with lupus will read it and learn to add "sulfa allergy" to their list of allergies and carry it with their lupus medication list at all times. A common scenario is a lupus patients showing up at the ER with a UTI, then given Bactrim. If the person had an allergy list with them and gave it to the ER staff, it'd save them from this problem. Thanks for reading my post. I'll continue to share practical, helpful advice

Van Vu, PharmD

10/24/2020 12:28:43 am

As a pharmacist with lupus, I agree that when possible, one should avoid sulfa antibiotics in lupus patients to prevent flares and air on the side of caution. However, I will counter argue listing it as an allergy. Here’s why:

1) When you list "sulfa antibiotics" as an allergy, it is considered an allergy for ALL sulfa drugs in your medical record. Simply because anyone with a sulfa allergy will have the potential to cross-react with any sulfonamide drugs. Pharmacists/providers will therefore air on the side of caution and avoid ANY sulfa drugs, not just antibiotics, especially with in someone with an unknown allergic reaction (which is the case for lupus patients). Now sulfa drugs is composed of MANY classes of medications including oral diabetic agents, diuretics for blood pressure, and celecoxib (Celebrex) - an NSAID. This could potentially delay treatment when picking up your medications at the pharmacy (pharmacists must verify with providers on drug allergy if prescribed sulfa drugs) or prevent you from receiving appropriate treatment. For example, a lupus patient with diabetes may have to resort to other, more expensive oral diabetic agents because of the listed sulfa allergy.

2) There are only a handful of sulfa antibiotics available, the most common Bactrim (sulfamethoxazole/trimethoprim). I would recommend having a conversation with your doctor on the risks vs. benefits in taking sulfa antibiotics, rather than listing sulfa antibiotics as an allergy unless you truly are allergic. In the case of an emergency or hospitalization, you will be monitored and in the event of a flare will be managed appropriately.

You as a lupus patient have the choice whether or not to list it as an allergy. My recommendation is to stay informed and talk with your doctor, if given sulfa antibiotics.

10/24/2020 11:45:03 am

Van Vu:

Of course you have a good point about the sulfonamide antibiotics vs other sulfonamides (other sulfonamides are safe for lupus patients). And, of course, an "intolerance" is a better term than "allergy." I always try to figure out ways to make things as simple for non-medical people to remember as possible. This particular concept can really get quite complicated when you dive right into it (like the Dunning-Kruger effect).

In my close to 30 years of having patients do this, I haven't run into any docs not RXing non-abx sulfonamides (such as hypoglycemics) when patients list a sulfa antibiotic allergy (I don't think most would have thought about it). However, now with more and more computer-assisted drug interactions programs being used, this could potentially happen. Today, I stress that it is only the sulfa-antibiotics (much easier for patients to remember than sulfonamide-antibiotics), and not other types of sulfa drugs. We have so many antibiotics today, that it is rare not to be able to find a substitute.

I absolutely agree with your stressing the importance of having a conversation with your doctor. However, if you were to poll most doctors on giving Bactrim (sulfamethoxazole/trimethoprim) to an SLE patient, the vast majority would do so (not knowing the potential poor outcome). Even if a physician were to try to look up avoiding Bactrim in lupus patients in UpToDate.com, this topic is only briefly mentioned (though it is) in the section on Pneumocystis pneumonia prevention of cyclophosphamide usage. (It really is hard to find if you search for it).

I've seen way too many SLE patients have severe flares of their SLE after being RXd Bactrim in the ER for their UTI, that it is a very important thing for them to remember to do. I always struggle on how to make things as accurate for patients to remember, but also how to simplify it so it is easy to remember.

I appreciate your reading my blog and commenting and hope to hear more from you in the future!

Van

11/1/2020 12:26:28 pm

Like all lupus we appreciate the work that you do! I only learned about this most recently. You are absolutely right, very limited resources out there. I have been given Bactrim for PJP prophylaxis when on high-dose of prednisone. Luckily nothing happened.

Again, thank you for your reply and the amazing work that you do for the lupus community.

Lupus Encyclopedia