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.
Lupus by Shanelle Gabrielle
"I still have a purpose ... A reason to smile ... I'm still living my life with no regrets."
You think you own me
Squeezed my life in your palms
Taken over my body
You think you are me
You think because
You've hijacked this vessel that you're captain
You think you can get away with mutiny
I'm still the same me
The same beautiful butterfly floating on the breeze
I ain't scared to wrestle the wind
To battle Raynauds thorns
Not afraid to diss this disease
To find peace
Be at ease with this disease
I miss my old life but I'm fashioning a new one with this disease
In no way am I saying this is easy
The way my cells fight themselves
That my chest being in a cage of pleurisy
That my scalp cries strands of my hair
That the pain in my knees which interfere with my prayers
Make it hard to sometimes find the joy in life
Makes the sun less bright
But I know no matter what
There's nothing that'll take away my fight
When it seems to make my day feel like night
I'll still reach for a star
When it seems my world spins left
I've resolved to force it to revolve right
And even if my limbs refuse to move
My spirit will still dance
Every day I'm going to
Choose to enhance this universe with my presence
In any way I can
Lupus is not me
But it's the spark that created a flame
My disease is not me
But it's the source of my vanity
Lupus you can't damage me
Because my body isn't all I possess
I still have a purpose
A reason to smile
I'm still living my life with no regrets.
Copyright Shanelle Gabriel
Share your comments below. Do you have a poem or other artistic work about lupus that you would like to share?
Read on to learn about newer tests that can help get a more accurate and faster diagnosis of lupus
The Positive ANA Begins the Journey
Lupus is a disease where the immune system of the affected person attacks their own body (called an autoimmune disease). If someone has symptoms suggestive of lupus (fatigue, joint pain, rash, fever, pleurisy, Raynaud's, mouth sores, etc) the doctor will usually order an antinuclear antibody (ANA, also called FANA) test as depicted in the picture above. This is what the lab technician sees under the microscope when someone's blood is positive for ANA. This is the initial test done in people who could possibly have systemic lupus erythematosus (SLE) because around 98% to 99% of adult SLE patients are positive for ANA (when both the IFA technique and ELISA lab methods are used). Children, especially young children, with SLE have higher rates of being ANA negative (as high as 15% to 20% in young children).
If positive, the patient is then often referred to a rheumatologist (the doctor who specializes in lupus)
The Visit to the Rheumatologist
The rheumatologist then does a complete history (asks about symptoms), performs a thorough physical examination, and does a whole bunch of blood work and takes a urine sample to look for lupus. However, since multiple other disorders can cause similar symptoms as lupus and can also cause a positive ANA, he or she will also look for these possibilities. These tests include labs such as anti-dsDNA, anti-Smith antibody, anti-SSA, anti-RNP, rheumatoid factor, anti-CCP antibody, complete blood counts, liver enzymes, kidney function test, C3 and C4 complements, Coombs' antibody, CH50 complement test, antiphospholipid antibodies, and a urine protein measurement.
The list of disorders that can mimic lupus and can have a positive ANA is broad and include (not an exhaustive list):
- Other systemic autoimmune diseases (such as rheumatoid arthritis, scleroderma, Sjogren's, polymyositis, mixed connective tissue disease, undifferentiated connective tissue disease)
- Infections (such as hepatitis C, hepatitis B, parvovirus infection, Epstein Barr virus infection)
Or, the ANA can be a normal finding. It is found in up to 20% of all women. For example, a 55-year-old woman could have joint pains due to a different type of arthritis (such as osteoarthritis, OA), be very tired and fatigued after going through menopause, and have a positive ANA as a normal finding.
If the rheumatologist diagnoses lupus or a related disorder, hopefully, you will be treated immediately. Or, the rheumatologist will find another reason for your problems and the ANA (such as the woman with OA in the above paragraph).
6 Years for a Diagnosis of Lupus?
Unfortunately, not everyone is so lucky. In 2014, UK Lupus did a survey of their members. Over 2500 SLE patients responded. The survey showed that it took an average of 6.4 years to get a correct diagnosis. Most ended up seeing multiple doctors before a diagnosis was reached. A few years later, the Lupus Foundation of America did a similar survey and found similar results, it took an average of 6 years. This is a travesty, and a huge unmet need. We need better ways to diagnose lupus.
We do have better and more accurate ways, by the way, read onwards! But 1st ... why does it take so long?
There are several reasons:
SLE will often start off slowly and add symptoms and problems and blood test results very slowly over time. Someone can actually have the disease lupus, feel miserable, yet not have enough evidence using the typical labs to make the diagnosis. The person often suffers while waiting for new problems to occur before enough evidence is present to properly make the diagnosis. The best solution for this problem is if we can figure out a way to identify the disease process of lupus earlier and faster by identifying an immune system abnormality that is unique for lupus. For example, maybe this could be a certain interferon signature in the blood work. However, we don't have this luxury yet.
Another possible scenario is the person who has enough evidence for a systemic autoimmune disease, but there is not enough to label it as one of them (such as SLE, rheumatoid arthritis, scleroderma, Sjogren's, or polymyositis). This person has evidence of an autoimmune disease, which we also call connective tissue diseases (CTDs), but it has not "differentiated" into one of the named CTDs. So, we label this person as having an undifferentiated connective tissue disease (UCTD).
People in the above situations could heed my advice and see a rheumatologist who does certain procedures to try to get a faster diagnosis (discussed below).
Musculoskeletal Ultrasound can look inside the Joints right in the Rheumatologist's Exam Room
Many, but not most, rheumatologists can perform an ultrasound exam of the joints right in the examination room. In the photo above, I am doing an exam of the big toe joint in a patient. You can see a very nice picture of the joint ultrasound image on the screen. The vertical blue line in the middle cuts right between the two bones of the toe (that is where the cartilage of the joint exists). The horizontal bright white line going to the right is one toe bone (the middle phalanx) and the left line that starts out as a hump is the other (the first metatarsal bone).
90% of adult SLE patients have inflammatory arthritis. They typically have pain in the joints and stiffness that is worse when they first wake up from sleep. The middle joints of the fingers, the knuckles, elbows, and knees are some of the most common joints affected. It can be very difficult to tell on physical examination (PE) when some SLE patients have inflammatory arthritis. They often will not have swelling of the joints on the PE. An ultrasound exam can be invaluable to diagnose arthritis accurately in these individuals. I've seen quite a few patients who were told they have fibromyalgia (which is not an arthritis) or arthralgias (joint pains without inflammatory arthritis) yet turn out to actually have lupus inflammatory arthritis easily seen on ultrasound.
Below is one of my SLE patient's ultrasound results of the wrist (I have her permission to use her image). Note the horizontal white line in the center between the red and yellow arrows. Those are two bones of her wrist (bright white = bone). Just above it is an oval dark area (the red arrow points at it). That is swelling and fluid inside of her wrist joint (fluid shows up as black). This is diagnostic of arthritis. Yet, more telling is the orange blotches that are on the rim of the joint swelling (yellow arrow). That is actual lupus inflammation of the joint. This ultrasound result made it very easy to prove she has lupus inflammatory arthritis.
(by the way, the upper orange blotch is blood in the vein just below the skin of her her hand. Look at the top of your hand. See those blue veins? Your veins would look like this under ultrasound).
Finding a Rheumatologist Certified in Musculoskeletal Ultrasound (rhMSUS)
So, first, you can search out a rheumatologist who does ultrasound in his or her office. You can figure this out by going to the American College of Rheumatology's website and look for a rheumatologist in your area who is certified to do these exams: https://www.rheumatology.org/Learning-Center/RhMSUS-Certification/RhMSUS-Designees
You can then look up the names of doctors in your area to see if they are on the list. These rheumatologists can put the initials rhMSUS after the MD of their name (rhMSUS stands for Musculoskeletal Ultrasound Certification in Rheumatology). My partner (Dr. Yevgeniy Sheyn, MD) and I were in the very first group of doctors to earn this prestigious certification.
The second best option is to call up rheumatology offices in your area and ask if their doctors do ultrasound exams. Most rheumatologists who perform ultrasound are not certified (and are not on this list), yet many of them are still excellent ultrasonographers. Ask the phone personnel who they would see in that office to get an US exam if they might have lupus. That is always a good question to ask. Office staff usually know who the best doctors to see in their practice are.
Exagen Diagnostic's AVISE Lupus Test and AVISE CTD Test
The second test that can be very helpful is to get newer and more accurate labs done. A company called Exagen specializes in lupus lab tests. A type of blood test called Cell-Bound Complement Activation Products (CB-CAPs) is more sensitive and accurate than standard tests in diagnosing lupus compared to the usual commercial insurance labs (LabCorp and Quest) that most doctors order from. Exagen put these valuable labs in two helpful tests called the AVISE Lupus Test and the AVISE CTD test. Anyone can get these tests done, yet only around 25% of rheumatologists order them.
Why do so few rheumatologists order these tests if they are so accurate in diagnosing SLE?
Previously, to order these tests, a rheumatologist had to have a lab technician in the office that could draw the blood, process it correctly, then send it to the Exagen labs in California. This is a lot of work. Most rheumatologists do not have the capability to do this, or do not want to put forth the extra effort and work to implement these tests in their office. (It can be a lot of hassle ordering new types of labs, fill out a lot of paperwork, and fight with the insurance companies to cover the lab costs for patients... so I can certainly understand why they would not want to do them!)
Below is an example of a patient who has a positive AVISE Lupus Test. The orange oval at the top left highlights this patient's positive result and the middle circle highlights it on the graph. The bottom orange oval highlights her positive CB-CAPS (EC4d and BC4d) that gave her the positive results. The value of this test is that CB-CAPS become positive due to activation of and consumption of complements (important immune system proteins). This is a key problem in SLE (complement activation and lower C3 and C4). Most rheumatologists order C3 and C4 complements on standard tests hoping to see low C3 or C4 to help diagnose SLE. However, this only occurs in 20% to 30% of SLE patients because the liver will often times produce a whole bunch more C3 and C4, which ends up normalizing the blood levels. CB-CAPS (EC4d and BC4d) results are not interfered with by this liver over production of C3 and C4.
You can imagine how this test could simplify things.
HOWEVER: a word of caution! ... if you happen to get this test done, please do not assume that a positive AVISE Lupus Test automatically means you have lupus. On the other hand, a negative result does not mean you do not have it. The test result increases or decreases the likelihood of having lupus. For example, if the patient with test result above started off with a low likelihood of having SLE, this result may not be enough to say she has SLE. However, if the result was much further on the right of the graph (such as a Tier 1 positive test), then that could be enough to say she has SLE.
So how can you get this valuable test done?
How to get the AVISE Lupus Test or AVISE CTD Test
It is now much easier to get the AVISE Lupus Test done. If you are interested in doing this. Follow my advice. Doctors are much more likely to do something if you make it as easy for them to do as possible. All doctors are overworked these days. So, if you make it easy, then it is a cinch.
1. Download the order form from Exagen.: https://1rn4xv3o8v9yy7scj1xot3b1-wpengine.netdna-ssl.com/wp-content/uploads/LM1028_Universal_APN_0320-1.pdf
2. Fill out the form completely with all your information and the doctor's information.
3. In Step 2 circle the diagnosis D89.89
4. Check the boxes that say "AVISE CTD Test" and the one underneath it that says "Add AVISE SLE Prognostic regardless of AVISE Index Result" and the "Add anti-Histone"
5. On page 3 print and sign your name. Fill out the last page if appropriate (sometimes you will get the test for free)
6. Make an appointment with your rheumatologist. Very tactfully ask, "Could I possibly get this lab test done for lupus called the AVISE test? I already filled out all the paperwork and I can get it done at a local lab". Then just have him or her write in their NPI number upper right side and sign anywhere on the first page.
Also (important) ask them to add the diagnostic code D89.89 to the clinic visit note for that day.
7. Go to the lab locator online at: https://avisetest.com/telavise-draw-site-locator/
8. Type in your zip code to find the closest lab that can do the test.
9. Call Exagen at 888-452-1522, option 3. Tell them you'd like to get the test done and you have the paperwork. Ask them how much it will end up costing you with your insurance. Most people pay a copay of $0 to $45. If you have no insurance, I believe it is $100 as of 2020. Then ask them what your next steps are.
10. Go to the lab to get your lab drawn, then see your rheumatologist a couple of weeks later to discuss the results.
I strongly believe that people get better healthcare when they are proactive in their healthcare. If you have a positive ANA, have symptoms that could potentially be caused by lupus, had a thorough workup, yet you feel like you don't have a good answer, take my advice.
- Find a rheumatologist who can do an ultrasound of your joints
- And get the AVISE CTD or AVISE Lupus test done
if you do this, then you can be confident that you have done everything that you can with today's modern technology. I hope in the future that I can report on even better tests. A lot of research is being done looking into this, and I will certainly report on it when it becomes available.
I would love to hear from you about your experience. Write comments below under "LEAVE A REPLY". If you have lupus, how long did it take? Was it frustrating? What ended up being the key in getting your diagnosis correct? Also, if anyone has any questions, I'll also be glad to answer them.
Please SHARE with anyone who is struggling to get a proper diagnosis after being ANA positive.
NOTE: I am on the Speaker's Bureau for Exagen. I do believe strongly in how their tests improve patient care. Note, that the Lupus Foundation of America has also partnered with them to support their help for lupus patients.
CB-CAPS became a reality partially due big efforts and funding from The Lupus Foundation of America. Please join in you have lupus and are not a member. It is a wonderful organization fighting for your health!
Don Thomas, MD, author of "The Lupus Encyclopedia"
Photo #1 credit (ANA picture): from Simon Caulton on Wikipedia.com
Hot off the press SEP 2020! The future is very bright for lupus treatments!
The future has never been brighter for lupus patients!
We have 3 drugs that are vying for FDA approval soon: Benlysta (belimumab) for lupus nephritis, voclosporin for lupus nephritis, and anifrolumab for systemic lupus erythematosus (SLE). All three were successful in the final research studies (called phase 3 clinical trials). In medical-speak, we say that "they met their primary endpoints."
My (Don Thomas, MD) prediction:
Though meeting the primary endpoints in phase III clinical trials never guarantees FDA-approval (many do not), these did so well, I predict they will be the next 3 FDA-approved therapies! They all did so well, along with having excellent safety profiles (low side effects for the amount of benefits they provided).
SHARE this with all lupus patients. Everyone needs some optimism.
Why is this so joyous? In March 2011, Benlysta was the very first FDA-approved drug for lupus since President Eisenhower was president (it took over 50 years!). That is a travesty. However, the approval of Benlysta showed pharmaceutical companies that it was worth their time, effort, and money to actively research lupus in more depth and that drugs could be proven to be helpful in treating SLE. And now... we have possibly 2 new drugs just around the corner (voclosporin and anifrolumab)? Yes, it is time to rejoice, hope, and pray that the FDA finds the research results to be as good as they appear.
This post, though, is all about Benlysta. Just this week, the New England Journal of Medicine published the positive results of their research study called BLISS-LN (Link to the study is below). This stands for "BeLImumab in Subjects with SLE with Lupus Nephritis study." It showed that Benlysta is effective for lupus nephritis.
Let's 1st briefly discuss lupus nephritis ...
When lupus attacks a person's kidneys it is called lupus nephritis (nephr- refers to kidneys, -itis means inflammation). Depending on the study, overall, approximately 50% of SLE patients will get this major problem. In some populations it is much more common (such as in over 70% of Caribbean-African people with SLE), and as low as 30% in Caucasians with SLE. When caught early and treated quickly, most patients go into low disease activity or remission. If not, it can cause kidney failure, the need for dialysis, and the need for kidney transplantation. Along this very hard road, lots of deaths occur.
This is why rheumatologists ask to see their patients every 3 months. We want a urine sample to evaluate and make sure our patient isn't getting lupus nephritis. When I see it as a possibility, I pounce on it and treat it aggressively. Using this approach, my only patients who have gone into kidney failure and dialysis, and then kidney transplantation were my patients who were poorly adherent to their therapy. By the way, don't let that happen to you!
Read and abide by my Lupus Secrets. If you follow them, you'll successfully fight your lupus.
Now for the study, in brief.
They had 224 patients in the placebo group and 224 patients on Benlysta. However, it wasn't really placebo. The "placebo" group was getting standard of care (steroids plus either cyclophosphamide or CellCept, mycophenolate). Those who received Benlysta had their Benlysta in addition to the "standard of care."
It had some impressive results after 104 weeks:
30% of the Benlysta group had a complete response to therapy while 20% of the placebo group did. That is 50% greater in the Benlysta group compared to standard of care plus placebo group. This is impressive. The "placebo group" is how we currently treat lupus nephritis patients! Imagine getting a 50% higher response rate by adding another medicine.
By the way, you may think, well an additional drug! That could mean more side effects. Guess what? ... Serious adverse events occurred in 30% of those on standard of care treatment plus placebo, while 26% of those on Benlysta plus standard of care had serious side effects. This is actually less in the Benlysta group. However, that does not mean that Benlysta causes less side effects. This is actually not statistically significant.
Also, don't think this is "horrible" that 30% of patients had "serious adverse events." Guess what would have happened without these treatments? ... virtually 100% serious adverse events would have occurred due to the lupus nephritis leading to kidney failure, dialysis, kidney transplantations and deaths. (the benefits of the medicines greatly outweigh their potential side effects compared to this).
By the way, there were other impressive positive results in the study, but I wanted to hone in on the "complete renal response" result above.
Remarkably, there were only 3 deaths (2 on placebo, 1 on Benlysta), only one patient went into complete kidney failure (a placebo patient). Impressive when you realize how horrible the alternative without treatment would have been.
I've been using Benlysta since 2011, and I have many SLE patients who are in low disease activity and remission after failing other treatments. This includes quite a few lupus nephritis patients. In my experience, it is one of the safest medicines we have for SLE. Plaquenil is probably the only safer drug.
The primary downside of Benlysta: EXPENSIVE!
It comes in two forms of dosing ... a self injectable every other week form, or a monthly IV (intravenous form). According to UpToDate.com, the self-injectable form costs close to US$ 30,000 a year. The IV form is more expensive (nurses, IV equipment, etc.)
So some big, important questions are:
Which patients will benefit the most?
Can we figure out which patients are at highest risk for not responding completely to standard of care therapy (CellCept and cyclophosphamide)?
If we could figure this out, then those patients should be the ones who get it.
It will be interesting to see what happens if it gets FDA-approved for lupus nephritis. I cannot imagine it not getting FDA approval, by the way. The study was that impressive.
Bottom Line?: Lots of exciting stuff happening in lupus!
Please COMMENT in "LEAVE A REPLY" below.
Are you on Benlysta? How are you doing? What is your experience like? Do you have lupus nephritis? How have you done?
I love giving good news!
- Don Thomas, MD
P.S. Remember to download my Lupus Secrets to learn more!
Reference: Furie R, et al. Two-Year, Randomized, Controlled Trial of Belimumab in Lupus Nephritis. NEJM SEP 2020;383:1117-1128
Disclosure: I am on the Speaker's Bureau for GSK, maker of Benlysta. This is the only pharmaceutical Speaker's Bureau I am on. I truly believe in Benlysta as being a great therapy for SLE patients. It is not for everyone, but many do great on it.
Don Thomas, MD
I specialize in taking care of patients with systemic lupus. I enjoy sharing helpful, practical information for them to use and be better able to live with and successfully fight against their disease. Make sure to read and follow my Lupus Secrets
The interactions of hepatitis C and systemic lupus is strange, and hepatitis C can mimic lupus ... read on!
Hepatitis C is a virus that can attack the liver (called hepatitis) as well as numerous other organs of the body. Untreated hepatitis C infection can cause jaundice, cirrhosis, and liver cancer. However, the anti-viral drugs used to treat hepatitis C are miracle drugs, resulting in over 95% of infected individuals being cured with them.
The hepatitis C virus is most commonly transmitted through exposure to infected blood, most commonly by IV drug use, blood transfusions, and needles sticks. However, sexual contact, mother to fetus transmission, tattooing, and body piercing can also result in infections. The CDC recommends that all adults be tested for hepatitis C. In those with increased risk for infection (such as IV drug users), regular testing should be done.
Drugs used to treat hepatitis C include:
Glecaprevir, Grazoprevir, Paritaprevir, Simeprevir, Voxilaprevir, Daclatasvir, Elbasvir, Ledipasvir, Ombitasvir, Pibrentasvir, Velpatasvir, Sofosbuvir, and Dasabuvir.
Hepatitis C can also cause the immune system to become overactive. Hepatitis C infection can look exactly like systemic lupus erythematosus (SLE). Hepatitis C infection can produce many of the same antibodies seen in SLE and cause many of the same problems, such as arthritis, rashes, vasculitis, kidney disease, and nerve problems. This is why rheumatologists usually test everyone that may have SLE for hepatitis C. Treating and curing the person of hepatitis C results in the lupus-like disease disappearing.
Since hepatitis C causes the immune system to become more active, if someone with SLE gets infected, their SLE can potentially become more active. Also, SLE patients have a higher chance of being infected with hepatitis C than the general population. This probably occurs due to their immune system, not being able to protect the person as well as it should. For unknown reasons, hepatitis B infections do not occur more commonly in SLE patients. All SLE adults should get tested for hepatitis C and undergo treatment if positive for an active infection.
- Don Thomas, MD
Reference: Mahroum N, Hejly A, Tiosano S, et al. Chronic hepatitis C viral infection among SLE patients: the significance of coexistence. Immunol Res. 2017;65(2):477-481. doi:10.1007/s12026-016-8886-7
Photo credit = Wikipedia and Blausen Medical Communications, Inc
That is right!
Many of you reading this post should get the hepatitis B vaccine
Less commonly known reasons for getting a Hep B vaccine include:
- Diabetics aged 19 through 59 who have not been vaccinated!
- Anyone with fatty liver disease
- An ALT or AST (liver blood tests) greater than twice the upper limits
Read the below link to learn why these groups should get a hepatitis B vaccine per the CDC
Here is the CDC's rationale for these groups getting vaccinated as well as a list of other at risk individuals who should get vaccinated:
Many of you reading this should get it based upon this and you (and possibly even your doctor) did not know.
Get your hepatitis B vaccine
- Don Thomas, MD
Photo shows a man with jaundice (note the yellow eyes) due to hepatitis. (photo credit = CDC)
Mahroum N, Hejly A, Tiosano S, et al. Chronic hepatitis C viral infection among SLE patients: the significance of coexistence. Immunol Res. 2017;65(2):477-481. doi:10.1007/s12026-016-8886-7
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
The Flu Shot is a Life-Saver for Lupus Patients
It's that time of year again. Time to get your flu shot! I already got mine, have you gotten yours. Here are some important facts about the flu shot, infections, and systemic lupus erythematosus (SLE):
- Infections are the 3rd most common cause of death in SLE and most are preventable with measures such as vaccines. Learn of the importance of preventing infections in Dr. Thomas' Lupus Secrets
- The 2018 - 2019 flu season caused close to 60,000 flu-related hospitalizations in the United States.
- Fortunately, with the public practicing social distancing, hand-washing, mask-wearing, etc. due to COVID-19, hopefully we'll see less influenza. However, we still need everyone to get the flu shot. Getting COVID-19 plus influenza would be deadly.
- The flu shot reduces the risk of getting the flu by 50%, but if you get it, you are more likely to have a less severe infection as per the below ...
- People who get the flu shot are 82% less likely to end up in the intensive care unit. SLE patients are 60% less likely to die compared to people with SLE who do not get vaccinated.
- The flu shot has never given anyone the flu = Fact!
- The flu shot does not cause autism.
- You should still get the flu shot, even if you have an egg allergy.
- You can get the flu shot on any of your lupus medications. However, prednisone greater than 40 mg a day will decrease your response to the vaccine. If you are on Rituxan, try to get it 4 weeks before your Rituxan dose.
- If you do not believe in getting the flu shot (shame on you), at least get it to protect the ones you love. This is one of the main reasons why we health care professionals get it. We want to lower the chances of spreading it to our patients.
Please get your flu shot. The life you save may be your own.
- Don Thomas, MD
Diabetes has been considered an important cause of heart attacks and strokes for a long time. While systemic lupus erythematosus (SLE) has been noted by experts to also cause heart attacks and strokes, it has never been included in the main list of causes (diabetes, high blood pressure, high cholesterol) by any of the “leaders” of the scientific community, such as The American Heart Association. A recent 2020 study in the journal Arthritis Care & Research looked at the Medicaid database from 29 states. Comparing over 40,000 SLE patients with over 80,000 diabetics during the years 2007 and 2010, they showed that the lupus patients had a 27% higher chance of having heart attacks and strokes than the diabetics. The research has been overwhelming regarding how important of a risk factor lupus is for causing these problems. Heart attacks and strokes (i.e. cardiovascular disease) are the #1 cause of death in SLE patients, and these problems occur much earlier in life than they should. It is time for SLE to be added to the list of diseases that are most likely to increase the risk for having heart attacks and strokes.
The Bottom Line:
If you have SLE, it is imperative that you do everything possible to prevent heart attacks and strokes. Make sure to read and practice everything in my "Lupus Secrets" for good advice on what to do.
Find out the top tips for living a long, healthy life with lupus.
Do you have lupus?
Do you know someone who has lupus?
Would you like to know the secrets of living a long, healthy life with lupus?
If so … Read on.
And welcome. This is my very first post!
I am a rheumatologist who specializes in lupus. Over the past 25 years, I’ve compiled a list of “do’s” and “dont’s” for my lupus patients. These are tips that are guaranteed to help them be healthier and live longer. I called them “The Lupus Secrets” because most lupus patients do not know about them, and most doctors do not know about them. But I do not want to keep them secret. I witnessed firsthand over the years how much of a difference it made for lupus patients who followed them compared to patients who did not. This realization led me to write a practical lupus patient education book called “The Lupus Encyclopedia.”
How helpful are they? Let me tell you about a patient I recently saw. I’ve taken care of her for about 20 years. She has systemic lupus erythematosus (the type of lupus that can attack any part of the body). She has been a model patient, closely following my “Lupus Secrets” all these years. Recently, she had a flare of her lupus arthritis, fatigue, and lupus rash after being in remission for years. I checked a hydroxychloroquine (Plaquenil) drug level, and it was very low, telling me she was missing lots of doses. I was shocked. This was the reason for her flare, and it was not like her to do this.
When I pointed this out to her, she said, “Well, the pharmacist put on the prescription bottle label ‘take with food.’ I’ve been dieting to lose weight and eating less meals, so I kept forgetting it.” I then reminded her to please always contact me through our internet Patient Portal for any questions at all, such as this. I told her the label was a mistake; she actually CAN take it without food. After a shot of steroids in her buttock and getting back on her Plaquenil regularly, she was quickly in remission again.
I was pleasantly surprised to get the most beautiful “Thank You” card from her. It read:
“Dr. Thomas … Just want you to know that I highly respect you as my doctor… This has been a wake up call for me and ... You really care about your patients. God has kept me here with your help and I want to live a long time. No one lived past 60 years in my family.”
It is something like this that truly makes your day. All of us can relate to this when something we do is genuinely appreciated by someone else.
However, what truly makes this card special?
My patient is now 73 years old. She has outlived all her relatives by 13 years …
She has lupus, and she lives by “The Lupus Secrets.”
My clinic is now full of systemic lupus patients in their 60s through 80s -- something unheard of a couple of decades ago.
So, I hope you follow the path of this patient (and my other successful patients). Most of my patients with systemic lupus are in remission (or with low disease activity), including many who came through life-threatening bouts of their lupus. Read over and follow everything in my “Lupus Secrets” yourself.
What I will be doing with my blog in later articles:
Now my challenge for you … download, copy, read, and begin incorporating everything in “The Lupus Secrets” into your own life. If you do this, I promise you will do much better with your lupus and will increase your chances of living a healthier and longer life.
Please SHARE my blog with others who have lupus so they can also learn the best things to do.
Remembr -- knowledge is power. I hope to share with you as much as I can through my blog!
Don Thomas, MD
Author of “The Lupus Encyclopedia”
Arthritis and Pain Associates of Prince George’s County
Greenbelt, Maryland, USA
The purple butterfly is the symbol for lupus. It is a symbol of "HOPE" for brighter tomorrow.
Note that Dr. Thomas' posts are for informational purposes only, and are not meant to be specific medical advice for individuals. Always seek the advice of your healthcare provider with any questions regarding your own medical situation.
DONALD THOMAS, MD