Good Advice on Lupus and Bactrim [per sulfa antibiotic research]

Lupus and Bactrim: List sulfa antibiotics (like Bactrim) in your allergy list if you have lupus

Lupus patients are more likely to have allergies to antibiotics (plus, lupus and Bactrim are a bad combination)

While lupus and Bactrim are a bad combination, many systemic lupus erythematosus (SLE) patients also report numerous drug allergies. However, studies do not show an increased amount of allergies than non-lupus patients (other than antibiotics).

Lupus and antibiotics treatment:

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.

Patient Question: “Can you take amoxicillin if you have lupus?”

“Yes!” The good news is that we have dozens of other safe antibiotics that lupus patients can take.  Lupus and antibiotics treatment should not be complicated. As long as you list “sulfa antibiotics” on your drug intolerance list and show it to doctors, they can come up with safe alternatives. Although lupus and Bactrim are a bad idea, lupus patients can take many other medications safely.

The Lupus Secrets

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. The Lupus Secrets list is given 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 many people with SLE. My patients’ utilization of “The Lupus Secrets” is 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

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? Have you had any difficulties with your lupus and antibiotics treatment?

​Please click “Comments” 

The aiSLE DX Flare Risk Index Test: A new lupus lab test

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 is a Professor of Medicine and Microbiology & Immunology at the Albert Einstein College of Medicine

Watch a video of Dr. Putterman and me discussing lupus flares on YouTube.

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!

Author

Don Thomas, MD
Rheumatologist caring for lupus patients

Disclosure: I am on the Scientific Advisory Board of Progentec. I strongly believe in their mission and dedication to lupus patients.

Spotlight on a Good Poem by Devoted Lupus Warrior

Lupus by Lupus Warrior and Lupus Fighter 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
Lupus
You think because
You’ve hijacked this vessel that you’re captain
You think you can get away with mutiny
But see
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? If you have lupus, make sure to read and learn and do “The Lupus Secrets” as well.

Please be an advocate for lupus. Spread the word. 67% of Americans do not know what it is nor heard over it (from an LFA survey).

Positive ANA workup – Is it lupus or not?

Read on to learn about newer tests that can help get a more accurate and faster diagnosis of lupus for a positive ANA workup

 
Microscopic view of a positive fluorescent antinuclear antibody test used to diagnose a lupus patient

 

 

 

The Positive ANA Workup Begins the Journey

 
 
If someone is found to have a positive antinuclear antibody (ANA), the doctor will often tell the patient they need a positive ANA workup and that “lupus needs to be ruled out.”
 
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)

Doctor with stethoscope around the neck and pens and a penlight in the white lab coat pocket

 

 

 

The Visit to the Rheumatologist: Where the positive ANA workup often begins

 
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)
– Fibromyalgia
– Cancer
– Medications

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).

A large black 6 painted on a white wall with a man in jeans, coat, and hat leans back on the wall with his head down

 

 

 

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).

Dr. Donald Thomas holding an ultrasound transducer on the foot of a patient along with the screen image of the sonogram

 

 

 

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). 

Ultrasound image of a wrist showing lupus arthritis (inflammatory synovitis) on Doppler

 

 

 

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. 

Picture

 

 

 

Exagen Diagnostic’s AVISE Lupus Test and AVISE CTD Test for the “Positive ANA Workup”

 
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.

A positive AVISE Lupus Test result indicating a diagnosis of lupus

 

 

 

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?

A middle aged white female doctor in a white lab coat talking to a black female lupus patient about a lupus diagnosis

 

 

 

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. 

Asian man giving the thumbs up sign

 

 

 

BOTTOM LINE: 

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!

Wooden Scrabble tiles spelling out SHARE

 

 

 

Author

Donald Thomas, MD, author of “The Lupus Encyclopedia”

​Photo #1 credit (ANA picture): from Simon Caulton on Wikipedia.com

Benlysta for lupus nephritis: Studies show it is effective

Hot off the press SEP 2020! The future is very bright for lupus treatments!

Anatomical drawing of a kidney with artery, vein, and ureter

 

 

 

 

The future is brighter for lupus patients! Benlysta for lupus nephritis

We have 3 drugs that are vying for FDA approval soon: Benlysta 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 …    

 

Gold balloons in the shape of 50 in sunlight

 

 

 

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. 

A drawing of a doctor in white labcoat with stethoscope looking at image of kidneys on laptop

 

 

 

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.

 

Stacks of 100 dollar bills sitting on a table

 

 

 

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
DOI: 10.1056/NEJMoa2001180

 

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

Lupus and Hepatitis C: Lupus Patients Should be Tested for Hepatitis C

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.

Note that the Centers for Disease Control recommends that all “baby boomers” be tested for hepatitis C. Many baby boomers are infected and do not know that they have this curable infection.

Donald 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

Lupus and Hepatitis B Vaccine: Endorsed in the CDC guidelines

Lupus and Hepatitis B

That is right! Lupus and hepatitis B infection is not a good combination and needs to be prevented. Vaccinations are one way to do this. Many of you reading this post should get the hepatitis B vaccineLess commonly known reasons for getting a Hep B vaccine include:

– Diabetics aged 19 through 59 who have not been vaccinated! People with lupus who have taken steroids are at higher risk for diabetes, so diabetes is not uncommon in lupus patients.
– Anyone with fatty liver disease. Unfortunately, most systemic lupus patients are over weight due to many reasons. They therefore are at higher risk of 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: https://www.cdc.gov/vaccines/vpd/hepb/hcp/index.html

Many of you reading this should get it based upon this and you (and possibly even your doctor) did not know.

The importance of lupus and hepatitis B: Get your hepatitis B vaccine. Getting all your vaccines to prevent potentially deadly infections is part of “The Lupus Secrets.”

Dr. Donald Thomas, MD

Photo shows a man with jaundice (note the yellow eyes) due to hepatitis. (photo credit = CDC)

Man with yellow eyes due to jaundice from hepatitis
Man with yellow eyes due to jaundice from hepatitis


Improve Your Life: A Systemic Lupus Erythematosus Flare Test

Purple ribbon symbol for a systemic lupus erythematosus flare
A systemic lupus erythematosus flare can be predicted by new lab test: aiSLE DX test

Revolutionary New Lab Test: Predicts if a lupus patient will have a systemic lupus erythematosus flare!

A systemic lupus erythematosus flare can be devastating, interfere with quality of life, and can even cause organ damage. Imagine if they can be predicted ahead of time and then the patient be able to make appropriate actions to decrease the risk of that flare from happening? The future is now!

This lab test is called the aiSLE DX test by Progentec. It can predict if someone with systemic lupus erythematosus is at increased risk of having a flare during the next 3 months. If this were known, then the doctor and patient could ensure that everything possible is being done to control disease activity (not missing doses of medicines, using sunscreen religiously, eating an anti-inflammatory diet, exercising, getting at least 8 hours of sleep every night, etc.)

There are things that people can do to decrease them from occurring. For example, put into practice as much as you can from my “Lupus Secrets.”
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? These often include fatigue, joint pains, pleurisy chest pain, mouth sores, hair loss, sun induced rashes, nose sores, and joint stiffness and swelling.
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

Lupus Flare After Flu Shot? Question of the Day Here

Do Flu Shots Cause Lupus Flares? Lupus flare after flu shot?

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

10 Reasons Not to Get a Flu Shot: Learn the Truth Now!

10 Reasons Not to Get a Flu Shot: The Flu Shot is a Life-Saver for Lupus Patients, Other Autoimmune Disease Patients, and … well… Everyone!

White woman doctor giving female lupus patient a flu shot

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):

10 Reasons Not to Get a Flu Shot. (Or should you go ahead and get one)?

1) Don’t get the flu shot if you are not afraid of dying: Infections are among the top 3 causes 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

2) Don’t get the flu shot if you are a gambler: The 2018 – 2019 flu season caused close to 60,000 flu-related hospitalizations in the United States. Maybe you are not afraid of this high number.

3) Don’t get the flu shot if you are isolated and will never come into contact with another human for the next year: 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.

4) Don’t get the flu shot if you prefer to have a more severe influenza infection: 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 …

5) Don’t get the flu shot if you enjoy being on a breathing machine in the intensive care unit surrounded by COVID-19 infected patients: 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.

6) Don’t get the flu shot if your flu shot contains active influenza virus: However, the flu shot has never given anyone the flu = Fact!

7) Don’t get the flu shot if you are a “no vaxer” and there is no way to change your mind no matter what I say: The flu shot does not cause autism.

8) Don’t get the flu shot if your flu shot is made from eggs: You should still get the flu shot, even if you have an egg allergy. Most of today’s flu shots are safe for egg allergy sufferers. Ask your health care provider to ensure you receive the correct, safe vaccine.

9) Don’t get the flu shot if your flu shot contains live virus: However, flu shots do not contain live vaccine. You can get the flu shot on any of your immunosuppressant 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.

10) Don’t get the flu shot if you don’t care about hurting or infecting those around you: If you do not believe in getting the flu shot, 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.

Donald Thomas, MD