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Lupus Encyclopedia

Vitamin D, Lupus, and women of color

11/29/2020

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Is it important to take vitamin D if you have lupus?

"Ask Dr. T!" question of the week

Low vitamin D levels are associated with higher lupus disease activity

Low vitamin D levels can make lupus worse
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
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supplements that boost the immune system

11/28/2020

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Are they safe to take when you have lupus?

"Ask Dr. T!" question of the week

Please do not take Echinacea

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

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Bacteria in the urine increases lupus flares!

11/27/2020

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If we prevent this, could we decrease lupus flares?

bacteria in urine bacteriuria can cause lupus flares
Background for this study

- 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.
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Background of bacteria in the urine of women who have lupus

Women who have lupus commonly have bacteria in the 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...
Cranberry and mannose to decrease bacteriuria and reduce lupus flares

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!
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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.

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how severe is your lupus?

11/22/2020

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

Woman who has a malar rash (butterfly rash) due to lupus with lupus disease activity
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!

Hand holding tape measure to illustrate measuring lupus disease activity
Introducing: 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!


Results of the SLEDAI for lupus disease activity
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.

Subject to technical issues in measuring lupus disease activity
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. 
Picture
SLEDAI score 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

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Learn about Lupus nephritis (kidney inflammation)

11/14/2020

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Watch YouTube video about lupus nephritis linked below

You will learn:
- Why lupus nephritis is important for all systemic lupus patients
- How to properly collect a urine specimen
- The symptoms of lupus nephritis 
          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
- 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
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"

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Zoom lupus meeting, talks, questions, answers

11/11/2020

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Come join us NOV 21 on Zoom

Lupus Seminar ...
No Hotel!
No airplane flight!
No expensive eating out!


Sit down in your jammies with a cup of coffee, type any questions in the comments box during the meeting, share your experiences with other lupus patients and enjoy
Don Thomas, MD answers questions about lupus at lupus seminar

Author

Don Thomas, MD, author of "The Lupus Encyclopedia" and "The Lupus Secrets"

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Come join us November 21, 9:00 AM EST

11/9/2020

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Lupus Patient Educational Seminar on ZOOM:
Lupus Fatigue
What to eat when you have lupus
​Lots of time for Q&A
Presented by The Michigan Lupus Foundation

Conference and Seminar on Lupus
Register at the Michigan Lupus Foundation Website

Dr. Donald Thomas, MD will talk about Lupus Fatigue and will have lots of time for Q&A
Deanna Dahlinger, RDN will discuss diet and lupus
Michigan Lupus Foundation Lupus Seminar on Living with Lupus
Hope to see you there!

Author

Don Thomas, MD author of "The Lupus Encyclopedia"
Even though I'm a buckeye, I LOVE The Michigan Lupus Foundation!

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Q&A about living with lupus

11/8/2020

3 Comments

 

​QUESTIONS THAT MATTER TO PATIENTS!

Watch this YouTube video -- patients' important questions are answered about living with lupus

Questions about lupus treatments and living with lupus
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" above and share with us your thoughts on the topics and answers.
Share your experience.
Do you have any questions for Dr. Thomas?
Questions about living with lupus
Please share this YouTube video to others who may benefit 
Sharing this blog about living with lupus

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

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live facebook lupus seminar: Join us!

11/4/2020

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Dr. Thomas: "The Lupus Secrets" & answers questions about lupus

Donald Thomas MD talks about The Lupus Secrets and how to live with lupus
Please join us on November 7, 2020 at 5:00 PM EST (2PM PST)!

Just go to www.facebook.com/morethanlupus

Proposed Agenda: 

2:00 PM (PST) Molly will give a brief insight into her lupus journey. Click here to read about Molly's story

2:05 - 1:35 Dr. Thomas will present "Lupus Secrets"

2:35-2:45 Molly will read pre-submitted questions and questions vetted from the live stream

2:45-3:00 Kelli Roseta  of "More Than Lupus": Lupus Warrior and advocate for lupus patients for many years

3:00-3:15 Closing comments 

Please let everyone you know with lupus know to attend

Author

Don Thomas, MD author of "The Lupus Encyclopedia" and "The Lupus Secrets"

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What are your favorite lupus books?

11/3/2020

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Kelli of "More Than Lupus" describes her top books for lupus patients
​

What are your favorite lupus books?

You may be surprised to hear this, but mine are those regarding 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.

Click on "Comments" above and tell us what your favorite books are and why.

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

Author

Don 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!

Here are links to Kelli's favorite books!
​(NOTE: I get no compensation or kickbacks ... I just like sharing important information)

My Special Butterfly = How to tell you child about lupus (Written by a lupus warrior)

(In Spanish) Mi Mariposa Especial = Cómo decirle a su hijo sobre de lupus

When Lupus Throws you for a Loop = Practical advice on how to deal with, accept, and deal with a chronic disease (Written by a lupus warrior)

Freedom from Suffering = There is much more to living with chronic pain than taking medicines. Learn how in this practical book. 

Sick and Tired of Feeling Sick and Tired = Lupus is an invisible disease. Learn how to live with an invisible disease in this book
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    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.

    Author

    DONALD THOMAS, MD

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


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

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  • Blog
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    • about me
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