Lupus and Vitamin D Advice: Can be lowest in women of color

Lupus and vitamin D in Women of Color. Why and what to do-

Ask Dr. T!” question of the week

Vitamin D in women of color with lupus is an important problem. Women of color tend to have lower vitamin D levels, and this can be associated with worse lupus disease activity. 

Lupus and Vitamin D in Women of Color is a Big Problem for Many Reasons:

Here’s this weeks question:

Lupus patient:

I am a black woman with lupus and am constantly dealing with low vitamin d levels. Are low levels of d common in people of color? And can having low levels be making my lupus worse?

Dr. Donald Thomas replies:

I LOVE this question because it is so important.

Vitamin D is essential for the immune system to work properly. White blood cells have receptors (attachments) on their surfaces that bind to the active forms of vitamin D that float around in our bodies. This vitamin D attachment is vital for the immune system to work properly. When vitamin D levels are low, the immune system works abnormally, increasing inflammation and lupus disease activity. Correcting vitamin D levels can reverse this problem and it is so easy and safe to do.

Lupus vitamin D deficiency symptoms? Low levels of vitamin D can be associated with fatigue and body aches. Of course, when it causes lupus to become more active, it can lead to the butterfly rash, pleurisy, and other problems. Dr. Michelle Petri even showed that correcting low vitamin D can reduce flares and reduce proteinuria!

Several studies now show that if we keep the level at 40ng/mL and higher (but not higher than 80), lupus disease activity is better. Lupus flares are associated with low vitamin D levels. People of color have lower vitamin D levels because the melanin (pigment) of the skin decreases ultraviolet light from entering the skin deep enough to help the body produce vitamin D. So, this is a common problem.

However, it is incredibly easy to treat! Everyone’s body is different, and the required dose varies a lot from person to person.

Taking vitamin D regularly and using sunscreen religiously every day are two of the safest drugs used to help treat lupus. I always include them in my patients’ medication lists.

produced by Kelli Roseta’s “More Than Lupus

The mission of the More Than Lupus Foundation is to provide programs and support for those living with lupus, advocate for their needs, and collaborate with other government and lupus organizations to strive toward improving quality of life, and ultimately finding a cure.
AuthorDon Thomas, MD author of “The Lupus Encyclopedia” and “​The Lupus Secrets

References: Under chapter 38

Vitamins For Lupus: Avoid some is the best advice

Not All Supplements and Vitamins for Lupus Patients are Safe

Vitamins for lupus patients: “Ask Dr. T!” question of the week

For example: do not take Echinacea

Don Thomas, MD answers question about lupus and immune boosting supplements like Echinacea

It
​It is important to remember that lupus is a problem where the immune system is already over active. The last thing you want to do is “boost” it more!
Dr. Thomas says, “You are very smart for avoiding products that state they “boost the immune system.” This is not what want. It is already “boosted” in lupus. We want to normalize the immune system by calming it down. Echinacea as you mention can flare lupus, so I am glad you are avoiding it. There are absolutely no products (vitamins etc) that have been proven to prevent colds and flus, and believe me, over the past few decades, many studies have been done. The only thing that comes any where close to possibly help are zinc supplements, and these are safe to use. However, avoid the nasal spray form. It can cause loss of smell.”
produced by Kelli Roseta’s “More Than Lupus
The mission of the More Than Lupus Foundation is to provide programs and support for those living with lupus, advocate for their needs, and collaborate with other government and lupus organizations to strive toward improving quality of life, and ultimately finding a cure.


Author

Don Thomas, MD author of “The Lupus Encyclopedia” and “​The Lupus Secrets

References: Under chapter 38

Bacteria in Urine May Increase Lupus Flares

If we prevent bacteria in urine (bacteriuria), could we decrease lupus flares?

Bacteria in urine was found in a study to possibly increase flares in lupus patients. If this is true, then decreasing bacteria in the urine could possibly help lower the risk of lupus flare is people who have systemic lupus erythematosus (SLE).

Bacteria in urine is a common problem in women, so this could be an important problem to address.

Background for this study

– Could bacteria in urine cause lupus flares? Bacteria such as E. coli can infect the urinary tract, such as the bladder. They can produce proteins called “amyloid curli” that can trigger the immune system to become more active. Part of this is through something called “toll-like receptors,” a well-known trigger of increased lupus activity.
(Off topic, Plaquenil, our most important drug for lupus inhibits toll-like receptors- one way it works for lupus).

– This bacterial amyloid curli is connected to something called extracellular DNA (DNA from the bacteria that sits on the outside of the cell).
Remember, that anti-dsDNA antibodies are very important in lupus disease activity. 

– This bacterial DNA can “mimic” human DNA and potentially trigger the immune system to make autoantibodies to anti-dsDNA, like we see in lupus!

– Research studies showed that when this amyloid curli bound to extracellular DNA (from bacteria) is injected into mice that are genetically predisposed to having lupus, they develop systemic lupus quicker and more often.

Background of bacteria in urine of women who have lupus

Women who have lupus commonly have bacteria in their urine. This is partly due to the urethra of women being so short. This allows bacteria from the vagina and vulva to enter the bladder easier. This is common in all women. Most of the time, these bacteria do not cause infection (urinary tract infection, UTI). 

We get a urine sample from our patients with systemic lupus erythematosus (SLE) every 3 months to make sure they do not have inflammation of the kidneys (lupus nephritis). Many times there are bacteria in the urine when we analyze it.

One of the most common phone calls my medical assistant makes for me is calling up my SLE patients and asking, “are you having any UTI symptoms?” Usually they say “no,” in which case we call it “asymptomatic bacteriuria” (there is bacteria in the urine but the person does not have any symptoms of a UTI).

The standard of medical care is to NOT treat it with antibiotics. Asymptomatic bacteriuria usually does not cause problems. However, an antibiotic has a high risk for side effects (stomach upset, allergic reaction, rash, yeast infection, and so on). So, instead, we ask our patients to drink cranberry juice daily, take a cranberry supplement, and/or take D-Mannose daily. This is based on research where 13 studies with 1616 subjects demonstrated that taking daily cranberry reduced UTIs by approximately 40%. Studies also show that cranberry decreases the ability of urinary bacteria to stick to the walls of the bladder and urethra.

In the past, I always told my patients, “this is common because of your short urethra and is nothing to worry about.” 

THIS STUDY WILL CHANGE MY MIND AND WHAT I TELL MY PATIENTS… READ ON…

Photo above is one possible type of supplement that may decrease the risk of UTIs when taken daily. It contains both cranberry and D-mannose. I am not advocating this particular brand, it is just an example.

This Research Study Showed that Lupus Women with Bacteria in the Urine have more Lupus Flares!

These researchers measured antibodies to these bacteria proteins bound to DNA and they showed:

– 1/3 of SLE women have persistent bacteria in the urine!
– These lupus patients tend to have more active lupus disease than those women without bacteria in the urine
– They were also more likely to have high anti-dsDNA levels and low C3 and C4 complement levels (indicators of active lupus inflammation)
– They also had higher levels of antibodies to this amyloid curli/DNA complexes
– These curli/DNA complexes from the urinary bacteria cross-reacted with lupus autoantigen dsDNA! (suggesting something called molecular mimicry)

MAJOR FINDING: The urinary bacteria’s curli/DNA proteins triggered increased lupus inflammation and lupus flares in women with SLE!

A summary of this research in the highly acclaimed medical journal “Arthritis & Rheumatology” summarized:

“Lupus patients with persistent bacteriuria could be targeted with appropriate antibiotic therapy as adjunct to standard of care.”

HOW THIS WILL CHANGE MY PRACTICE:

I will not start treating all my SLE patients with asymptomatic bacteriuria with antibiotics. The potential risks of side effects from the antibiotics outweigh the potential benefits. I will await the next-step research where someone does a research study treating SLE patients like this with antibiotics and see what happens. However, what I will do…

In SLE patients who have bacteria in their urine (bacteriuria), I will recommend that they consider taking a cranberry supplement and/or D-Mannose supplement daily and stay on it. It is such a safe thing to do with potential significant benefits.

Fascinating study that has the potential for significant positive benefits for our patients. Thank you to the dedicated researchers of Ryan Pachucki, MS, and Roberto Caricchio, MD and their entire team!

Do you get frequent urinary tract infections? Do you notice any relationship to lupus flares? Please comment and share your experience

SHARE THIS IMPORTANT, PRACTICAL POST WITH EVERYONE YOU KNOW WHO HAS LUPUS!

Author

Don Thomas, MD, author of “The Lupus Encyclopedia” and “The Lupus Secrets

REFERENCES:
– Wang CH et al. Cranberry-containing products for prevention of urinary tract infections in susceptible populations: a systematic review and meta-analysis of randomized controlled trials. Arch Intern Med. 2012;172(13):988.

– Kranjčec B, Papeš D, Altarac S. D-mannose powder for prophylaxis of recurrent urinary tract infections in women: a randomized clinical trial. World J Urol. 2014 Feb;32(1):79-84. doi: 10.1007/s00345-013-1091-6. Epub 2013 Apr 30. PMID: 23633128.​

– Pachucki RJ, Corradetti C, Kohler L, Ghadiali J, Gallo PM, Nicastro L, Tursi SA, Gallucci S, Tükel Ç, Caricchio R. Persistent Bacteriuria and Antibodies Recognizing Curli/eDNA Complexes From Escherichia coli Are Linked to Flares in Systemic Lupus Erythematosus. Arthritis Rheumatol. 2020 Jun 17. doi: 10.1002/art.41400. Epub ahead of print. PMID: 32840064.

How Severe is Your Lupus? Use a Lupus Severity Index

Read on: learn how you to figure out your lupus disease activity
And why it is important

Why measuring lupus disease activity is so important

Our goal in treating systemic lupus erythematosus (SLE) is to get it into remission and on no, or very little, steroids (such as prednisone). This means getting rid of all inflammation using medications as well as ultraviolet light protection, vitamin D, and the other measures as discussed in my “Lupus Secrets.”

It is a good idea to get a sense of how severe your SLE is. Some patients resist additional treatment when we recommend it. They think that their lupus is not bad enough to warrant additional drugs or higher doses of the medicines they are taking.

On the other hand, you may feel that  your lupus is more active than your rheumatologist thinks. Some rheumatologists may underestimate the severity of someone’s lupus. You could help your rheumatologist by calculating the severity yourself, present the results to him or her to see what they think about therapy.

So, how can you measure how active your lupus disease activity is? … EASY!

Introducing: The SLEDAI

The Systemic Lupus Erythematosus Disease Activity Index (SLEDAI for short) is a research tool that is used to measure lupus disease activity in research. Yet, it is also helpful for doctors to understand how active someone’s SLE is. This information can help make better decisions regarding treatment.

Here is an online calculator that makes it incredibly easy to calculate your score:

https://qxmd.com/calculate/calculator_335/sledai-2k

To use the SLEDAI (table 29.1), get a copy of the last note, and lab results from your rheumatologist.

Go to the online calculator and click “yes” or “no” for each question. It is essential to make sure that you completely fulfill the definition. For example, you may have severe arthritis from lupus in 2 joints. That does not count. You need 3 joints to be affected. You must click an answer for all 24 possibilities, then click on “Go to results” to see your final score.

IMPORTANT CAUTIONS WHEN DOING YOUR SLEDAI:

– Many to most patients will over score themselves. Please pay attention to these important recommendations. The SLEDAI is only for lupus inflammatory symptoms and NOT for type 2 symptoms (diffuse pain, fatigue, lupus fog, etc.)
– Only include those items active in the past 10 days
– Do NOT click yes for headaches. True lupus disease headaches are so rare, I’ve only seen 2 in my career. Lupus experts are recommending it even be removed from the SLEDAI
– Do NOT count visual disturbance. 99% of visual disturbances are not due to lupus inflammation. Only your ophthalmologist would know. You’d have to have had seen your eye doc in the past 10 days and they would have had to tell you that you have active inflammatory lupus retinopathy, maculopathy, or active optic neuritis (optic nerve damage, retina damage do not count)
– Do NOT mark CVA unless you had a new stroke in the past 10 days and it was 100% due to lupus (not from hardening of the arteries)
– Do NOT mark arthritis unless your rheumatologist tells you that you have active inflammatory arthritis of 3 or more joints (joint pain and other arthritis causes do not count)
– Do NOT click psychosis or organic brain syndrome unless your rheumatologist says these are active. Lupus fog and memory problems does not count.
– Do NOT mark alopecia unless a lupus dermatologist says you have active discoid lupus in your scalp causing hair loss or nonscarring alopecia from lupus. 90% of the time, hair loss in lupus is due to other causes (stress, telogen effluvium, androgenic alopecia, CCCA, traction alopecia, alopecia areata, etc) and these do not count
– Do NOT count mouth sores due to drugs such as methotrexate
– The labs have to be exactly as bad as they state in the definitions

Good luck on your scoring!

Meaning of the SLEDAI score:

1 to 5 is mild (low) disease activity (you may or may not need better treatment)
6 to 10 is moderate disease activity (your lupus needs better treatment)
11 and higher is severe (high) disease activity (your lupus needs better treatment) 

Our treatment goal is to always try to get you into remission (a score of 0) plus not be on any steroids (like prednisone). 

However, suppose we have tried all therapies that we think are safe and proper to use for your condition. In that case, low mild (low) disease activity is a second-best goal. If you are on prednisone, we want it to be 5 mg a day or less (but no steroids is always better). 

If your SLEDAI is 6 or higher, then you should discuss other treatment options with your rheumatologist. 

VERY IMPORTANT: This calculator does not take into account what we call “Type 2 symptoms” of lupus. This looks at type one symptoms. Those are lupus problems that we can improve with medicines that calm down the immune system.

Type 2 symptoms are by far the hardest part of lupus to treat. These are the overall body pain, severe fatigue, trouble with memory, “lupus fog,” and sleep problems.  I wish we had better treatments for these. This is a big unmet need in the treatment of our SLE patients. I’ll do a post later that discusses Type 1 vs Type 2 symptoms.

This method (as well as others) of measuring disease activity is not perfect. For example, suppose you have class IV lupus nephritis (kidney inflammation), your urine protein level (proteinuria) is 3 grams per 24 hours, your blood pressure is 190/110 (very high), your kidney function is decreased, and all other labs are normal. Your SLEDAI score is 4 (mild). However, all rheumatologists would agree that you have high disease activity (severe lupus) and are at increased risk for kidney failure if not treated aggressively.

Another example would be having a faint butterfly (malar) rash for 2 points and 3 slightly tender joints in the middle of the fingers with minimal discomfort (4 points). This person would be considered to have moderate disease activity in a research study using the SLEDAI score. However, it could be argued that this person is better categorized as having low disease activity.

All SLEDAI Scores Are Not the Same!

Two SLE patients can have the same SLEDAI score, yet one can have much more severe lupus than the other.

For example, an SLE patient with lupus nephritis (kidney inflammation) that has excess protein in the urine (proteinuria) severely decreased kidney function (kidney failure) due to the nephritis. Inflammation around the heart (pericarditis) has a SLEDAI score of 6. This would be categorized formally as “moderate” disease activity. Yet, most everyone would agree that this is “severe.”

Another SLE patient could have a platelet count of 90,000 per cubic milliliter (mildly low), an elevated anti-dsDNA level, and a low C3 complement level. This would also be a SLEDAI score of 6. I would consider this a case of “mild” SLE and is much less severe than the patient above who has life-threatening lupus without aggressive treatment (strong immunosuppressants).

SLEDAI scores can help rheumatologists learn how to measure their patients’ lupus more accurately

And how can a rheumatologist make the mistake of thinking someone has mild SLE that does not need additional treatment, yet she has worse disease than he thinks?

Suppose a week ago, you had your typical monthly lupus flare. You were fatigued. And you had arthritis pains in multiple joints that kept you from doing all usual activities during your menstrual cycle. As usual, the flare resolved after a few days, and when you see your rheumatologist, you tell him that you feel great except for those few days. Physical exam shows 3 mildly tender joints, some small sores on the roof of your mouth that you don’t notice, and your labs show a slightly elevated anti-dsDNA and a mildly low C4 complement level.

Many rheumatologists would consider you as having “mild” lupus. You had a “mild” flare that only lasted a few days, and the physical exam only shows a few tender joints and mouth sores that you do not even notice. However, suppose you measure the SLEDAI score. In this case, you have a total of 10 points (arthritis, mucosal ulcers, increased DNA, and low complement). You clearly have moderate disease activity, bordering on HIGH disease activity.

Research studies show that even mild flares increase ongoing organ damage over time. You clearly need better therapy to control your SLE. This is a reason why we think it is a good idea for rheumatologists to measure the SLEDAI on their SLE patients. It can help them get a better understanding of how active their SLE is. ​​

I always recommend: Be proactive in your health care. Knowledge is power

How active is your lupus?

Please leave comments. Click on COMMENTS above.
​What experiences and advice do you have?

Author

Donald Thomas, MD author of The Lupus Encyclopedia and “The Lupus Secrets

REFERENCES: Look under chapters 5, 19, and 29 at this link: https:///www.lupusencyclopedia.com/references.html

Proteinuria in Lupus Nephritis: Video tips and the bottom line

Watch YouTube video about proteinuria in lupus nephritis. It contains lots of great advice on helping your doctor identify lupus nephritis early and how to treat it

Proteinuria in lupus nephritis. This is what a kidney looks like
Proteinuria in lupus nephritis. This is what a kidney looks like
You will learn about proteinuria in lupus nephritis, tips and tricks to help you and your doctors:
– Proteinuria in lupus nephritis (LN) = excessive protein in the urine. Helps us diagnose LN
– Why lupus nephritis is important for all systemic lupus patients. It occurs in 45% – 50% of Americans with systemic lupus.  There are more than 100,000 Americans with lupus nephritis.
How to properly collect a urine specimen
– The symptoms of lupus nephritis, such as foamy urine (due to proteinuria in lupus nephritis), swollen ankles, fatigue, and urinating more at night
          Did you know that the most common symptom of early lupus nephritis is no symptoms at all?
– The different kinds of lupus nephritis
– How it is diagnosed
– The importance of diet, exercise, mindfulness in helping not only systemic lupus erythematosus, but also lupus nephritis.
– The roles of different health care providers in caring for lupus nephritis
How it is treated
– What happens when it is not treated
– How to get the most out of virtual online doctor visits
– An online support group for people who have lupus nephritis
– Lupus and high blood pressure. Why it is important to work on good BP control.
– How to prevent end stage lupus nephritis (kidney failure)
Video produced by Lupus Foundation of New England and Marisa Zeppieri “Lupus Chick”

Presented by Dr. Donald Thomas, MD, author of “The Lupus Encyclopedia” and “The Lupus Secrets

Sponsored by Aurinia Pharmaceuticals

Author

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

Living With Lupus Blog: The Lupus Encyclopedia – Q & A Video

Dr. Donald Thomas Answers Lupus Patients’ Questions on His Living With Lupus Blog: The Lupus Encyclopedia

Watch this YouTube video — patients’ important questions are answered about living with lupus

Dr. Donald Thomas’ Lupus Encyclopedia is a practical “living with lupus blog.” This presentation (link below) is published on YouTube by lupus warrior Kelli Roseta of “More Than Lupus
Moderator and questions are asked by lupus warrior Molly McCabe
Lupus questions about “The Lupus Secrets” and living with lupus are answered by Don Thomas, MD

Topics include:

Hydroxychloroquine (Plaquenil) dosing, safety, how to avoid eye problems
Belimumab (Benlysta) safety and helpfulness for lupus
How long does it take for Benlysta to work?
Which lupus patients are the best candidates for Benlysta treatment
Genetics and epigenetics that can predispose people to getting lupus
Why lupus occurs more often in people of color (African descent, Hispanic, Asian, indigenous peoples)
The treatment of lupus and rheumatoid arthritis overlap, also called rhupus
What is the significance of an antinuclear antibody (ANA) test becoming negative in a lupus patient?
How to ensure that new doctors believe your diagnosis of systemic lupus made by a previous doctor
The use of hormone replacement therapy (estrogen, progesterone) in women after menopause
Steroid usage in lupus. Should it be stopped?

Please click on “Comments” and share with us your thoughts on the topics and answers.
Share your experience.
Do you have any questions for Dr. Thomas?
Please share this YouTube video and Living with Lupus Blog with others who may benefit 

Author

Don Thomas, MD, author of “The Lupus Encyclopedia” and brought to you by Kelli Roseta of “More Than Lupus” and author of “My Special Butterfly”

Disclosure:
Dr. Thomas is on the Speakers’ Bureau of GlaxoSmithKline for belimumab (Benlysta). He mentions this in his answers as well in the video

The Best Lupus Books? Look in the useful list below

Kelli of “More Than Lupus” describes what she considers the best lupus books

What are your favorite lupus books?

The best lupus books should deal with all aspects of lupus, evaluating the best medical evidence. They may also include eating an anti-inflammatory diet, how to deal with chronic disease, and how to tell others about your lupus!

The research is piling up about the importance of eating a diet that is high in omega-3 fatty acids (such as cold water fishes, flax seed, chia seed, walnuts) and limiting the intake of inflammatory foods. Foods that increase inflammation in the body include omega-6 fatty acids (such as found in red meats).

Taking care of lupus is so much more than just taking your medicines. Of course, taking your lupus medicines and never missing doses is essential. However, make sure to learn about and do everything in “The Lupus Secrets” to learn more.

By the way, I appreciate Kelli mentioning “The Lupus Encyclopedia!”

The Lupus Encyclopedia One of the Best Lupus Books
The Lupus Encyclopedia One of the Best Lupus Books per “More Than Lupus”

If you get “The Lupus Encyclopedia” make sure to read the Preface. It gives you practical advice on exactly how to read the book and make it apply to your situation. Make sure to look up all your medicines and learn all about how to use them at the time of surgery, around vaccines, what side effects are actually associated with them (and not just a laundry list like the pharmacy will give you), what do do if you miss doses, how they work, etc.

Click on “Comments” above and tell us what your best lupus books are and why. I would especially like to hear what your favorite anti-inflammatory diet books are that are high quality and do not promise a “cure” for lupus.

Make sure to share my blog and “Lupus Secrets” with everyone who has lupus!

Author

Donald Thomas, MD: I’m a rheumatologist who specializes in taking care of patients who have lupus, but also educating them on how to take better care of themselves. Remember…

Knowledge is Power!