Lupus Encyclopedia

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

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.  

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!

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: 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!

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?

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

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

Hope to see you there!

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?

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

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!

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