Blog Posts

Probiotics and Lupus

12/22/2020

Should you take probiotics if you have lupus?

My answer in short: "No" to pills; "Yes" to probiotic and prebiotic-rich foods!

Lupus Question of the Day:
"Probiotic supplements seem to be a real trend these days. Is gut bacteria linked to lupus? If so, is there value in taking probiotic supplements? "

My answer:
"There are good bacteria in the microbiome that improve our health and bad bacteria that harm us. The microbiome includes all the living organisms inside and on our body (but good ones and bad ones). Probiotics are made up of bacteria that when you consume them in food or supplements, you "hope" that they enter your gut and improve your gut microbiome.

Several bacteria in our microbiome have been shown to be bad for lupus and other autoimmune diseases. They have been linked with making the immune system more active and are associated with inducing the immune system to produce autoantibodies (like anti-SSA) that can attack our body. Others have been shown to protect us and decrease lupus disease activity. Most of these studies have been in lupus mice. However, there are also human studies as well.

I do not recommend taking a probiotic supplement. Why? Animal studies show that some bacteria in these supplements actually make some autoimmune diseases worse, while improving others. I recommend the following (instead of taking probiotic pills or capsules):

- Eat foods rich in healthy probiotics regularly.

Examples include fermented sauerkraut, live-culture yogurt (I love Siggi's), kim chee, miso, kombucha, and fermented pickles.

- Eat foods rich in prebiotics as well. Particularly "resistant starches" may be beneficial. A lupus mouse study showed decreased lupus disease activity in lupus mice fed a "resistant starch" diet. Examples of resistant starch foods = cooled potatoes that are cold, potatoes starch, cold oatmeal, beans, legumes.

Thank you to Kelli of "More than Lupus" for producing the "Ask Dr. T" series!
Go to her blog and Facebook page and join the lupus community!

What are your favorite probiotic and prebiotic foods?
Click COMMENTS above

Author

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

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Lupus and stress

12/20/2020

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The Science of how Stress affects the Immune System
Also: Tips on decreasing stress

This video discusses the science of lupus and stress -- followed by tips on decreasing stress

This video was recorded by the Lupus Foundation of America during their Living and Learning series December 2020 at the height of the COVID-19 epidemic and during the holiday season.

- The 1st part of the video goes over some of the science behind how stress abnormally affects the immune system

- Then I go over how people who are genetically predisposed to having lupus have a greater chance of developing lupus if they have had major stressors in their life (child abuse, physical abuse, sexual abuse, etc.)

- Then I go over how stress can cause lupus flares

- I end the video with practical pointers on how to decrease stress.

SHARE with everyone who has an autoimmune disease

COMMENT above: how do you deal with and prevent stress?

What advice do you have for others?

Author

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

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covid vaccine for lupus patients

12/18/2020

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Should lupus patients get the COVID-19 vaccine?

News Flash COVID-19 vaccine for lupus patients

What I tell my systemic lupus patients as of 12/18/20: 4:00 PM

The Advisory Committee on Immunization Practices (ACIP) of the CDC made the following recommendations on 12/18/20 regarding vaccination in patients with autoimmune disorders. I'll first put in verbatim what was said (courtesy of the RheumNow website), then give my recommendations in a nutshell.

The ACIP of the CDC states:
< > = is wording that I inserted

"Persons with underlying medical conditions <such as lupus and other autoimmune disorders>:

... the vaccine may be administered to persons with underlying medical conditions who have no contraindications to vaccination. Phase 2/3 clinical trials demonstrated similar safety and efficacy profiles in persons with some underlying medical conditions, including those that place them at increased risk for severe COVID-19, compared to persons without comorbidities.

Immunocompromised persons: Persons with HIV infection, other immunocompromising conditions, or who take immunosuppressive medications or therapies might be at increased risk for severe COVID-19. Data are not currently available to establish vaccine safety and efficacy in these groups. Persons with stable HIV infection were included in phase 2/3 clinical trials, though data specific to this group are not yet available. Immunocompromised individuals may still receive COVID-19 vaccination if they have no contraindications to vaccination. However, they should be counseled about the unknown vaccine safety profile and effectiveness in immunocompromised populations, as well as the potential for reduced immune responses and the need to continue to follow all current guidance to protect themselves against COVID-19."

What I will tell my patients:

If you have lupus and just take an antimalarial such as Plaquenil:
- In the clinical trials, patients with underlying medical conditions with no contraindications to vaccines did as well with the COVID-19 vaccine as healthy people.
- This would apply to lupus patients who take hydroxychloroquine (Plaquenil). Plaquenil does not suppress the immune system.

If you take an immunosuppressant:
- Patients who take immunosuppressants (such as prednisone > 7.5 mg a day, mycophenolate, CellCept, azathioprine, Imuran, methotrexate, leflunomide, cyclophosphamide, cyclosporine, tacrolimus, Benlysta, and Rituxan) may get vaccinated if you do not have a contraindication to getting vaccines. However, the safety and effectiveness is unknown. There is always the chance that the vaccine may not work as well (in other words, not 95% effective). Therefore, you can never let your guard down. You must continue to practice strict infection prevention measures (washing hands, disinfecting, mask wearing, social distancing).

The Lupus Foundation of America put out additional information below:

https://www.lupus.org/resources/covid19-vaccine-and-lupus

The photo above of Covid vaccine comes from the LFA website

Opinion about the COVID-19 vaccine for lupus patients

How about you? Are you going to get the vaccine?

Share your opinions and comments by clicking "COMMENT" above

Author

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

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FDA approves Benlysta for lupus nephritis!

12/17/2020

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1st drug ever FDA-approved to treat lupus nephritis

Historic mile-stone!

December 16, 2020: The FDA approved on Wednesday DEC 16, 2020... Benlysta as the first drug ever FDA-approved to treat lupus nephritis (inflammation of the kidneys).

What should lupus patients know about lupus nephritis?

It is common
Lupus nephritis (LN) occurs in approximately 40% - 45% of people who have systemic lupus erythematosus (SLE). It occurs in some ethnicities more than others. For example, while 30% of Caucasian women with SLE will have LN, close to 80% of Caribbean women of African ancestry with SLE will develop LN.

It can occur at any time
When we look at people with LN, 1 out of 3 have LN when first diagnosed with SLE. It most commonly develops within the 1st 5 years. However, it can occur at any time, including after having SLE for many years.

It is why rheumatologists ask you for a urine sample every 3 months
It is diagnosed most commonly by finding an increased amount of protein in the urine. We want to catch it at the earliest stages possible when it is easiest to treat. Identifying it quickly increases the chances for remission.

The most common symptoms of lupus nephritis = you feel perfectly normal
Yes, that is correct. Early on with LN, there are no symptoms what-so-ever. By the time you feel any, you already have some significant kidney damage going on. Symptoms of LN once it gets to that more advanced stage include fatigue, swelling of the ankles that gets worse later on in the day (edema), weight gain (fluid retention), urinating more often at night time when in bed, foamy urine (from the increased protein in the urine).

We want to catch it when you feel completely normal. That is why it is so important to see your rheumatologist regularly when you feel great and give us that cup of urine.

Remission can and does happen! Here are the tricks to achieve remission:
- Help your rheumatologist catch it quickly by giving us a urine sample every 3 months.
- Get a kidney biopsy as quick as possible, and begin treatment as soon as possible if the urine sample is abnormal.
- Work hard on maintaining normal body weight.
- Do not smoke cigarettes. (Follow everything else in the Lupus Secrets)
- Take hydroxychloroquine (Plaquenil) religiously. It makes you 3-times more likely to go into remission.
- Take other prescribed medicines religiously (such as mycophenolate and azathioprine)
- If not on an ACE inhibitor or ARB blood pressure medicine, ask your doctor if you should, especially if you have increased protein in your urine.
- Ask your doctor to help you get your BP perfect. Have the top number (systolic) around 110 mmHg; have the bottom number less than 80 mmHg
- Keep your cholesterol perfect (take a statin if it is high)
- Exercise regularly
- Consider eating an anti-inflammatory diet (it has not been proven to put nephritis into remission because it has not been studied. However, there is good data that it can help decrease lupus inflammation in non-renal lupus.)
- Follow-up with your rheumatologist or nephrologist (kidney doctor) regularly. Your goal is to get your urine protein to creatinine ratio below 0.7 g/g (or < 700 mg:mg).

How effective is Benlysta for lupus nephritis?

In the phase III clinical trials, Benlysta IV (intravenous form) was added to the medicines we normally use to treat lupus nephritis (called standard of care, SOC). Some patients in the study got Benlysta + mycophenolate +/- hydroxychloroquine + steroids, some got Benlysta + cyclophosphamide + steroids +/- hydroxychloroquine, while others got Placebo plus mycophenolate or cyclophosphamide ( plus steroids +/- HCQ).

Results were remarkable. The most important of which is the "complete renal response" meaning marked reduction of protein in the urine close to normal (<0.5 g/g) by week 100 and no worsening of kidney function.

Complete renal response rates at week 100 (bottom left graph):

Placebo + standard of care = 20% complete response
Benlysta + standard of care = 30% complete response

Note that this is a 50% higher amount of complete responses compared to standard of care (30% is 50% greater than 20% mathematically).

That is remarkable. (However, a caveat... we still need better treatments for that other 70% who did not go into complete remission! ... read my comments at the bottom of this article for a possibility)

Graphs above come from the BLISS-LN trial published in the NEJM referenced below

How safe was Benlysta?

Benlysta continues to be one of our safest options for treating systemic lupus! There was not any statistically significant differences among side effects between the Benlysta group and the placebo group.

The most common side effects seen in the research studies were infections. However, it is important to remember that all patients were also treated with high dose steroids plus either mycophenolate or cyclophosphamide, which are strong immunosuppressant drugs. Interestingly, 0.7% of the patients who got Benlysta had infections while 1% of those on placebo did. (in other words, the other drugs, such as steroids, played the largest role in this).

Allergic reactions were seen as with any medication, but not common. For example, 0.9% of patients who received the placebo infusion had an infusion reaction, while 1.6% of those who got Benlysta did.

How is Benlysta dosed for lupus nephritis?

The IV form is the same as for other lupus problems (10mg/kg given 3 times in the first month; then 1 infusion monthly after that)

Interestingly, the self injectable subcutaneous form is different than for other types of lupus. It is recommended to do 2 injections weekly of 200 mg each (total of 400 mg) for the 1st four weeks. After that, it is just one injection weekly.

My prediction for the near future for lupus nephritis treatments

Voclosporin will probably be the next FDA-approved drug to treat lupus nephritis, and it will probably happen soon. It is a pill taken once a day.

How well did it do?
In the phase III clinical trial:
41% of the voclosporin + standard of care group had a complete response!
23% of the placebo + SOC group had a complete response

That is pretty close to twice as many patients going into remission compared to standard of care.

And voclosporin was safe! It is in the same group of drugs called calcineurin inhibitors (cyclosporine and tacrolimus) and it is safer than those two.

And what would happen if we were to use both voclosporin and Benlysta both together? They work through different mechanisms. We could potentially see even great remission rates.

As you can probably tell. I am pretty excited about the future of better therapies for lupus! They are not possibilities... they are actually happening right now.

Author

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

References:

Furie R, Rovin BH, Houssiau F, Malvar A, Teng YKO, Contreras G, Amoura Z, Yu X, Mok CC, Santiago MB, Saxena A, Green Y, Ji B, Kleoudis C, Burriss SW, Barnett C, Roth DA. Two-Year, Randomized, Controlled Trial of Belimumab in Lupus Nephritis. N Engl J Med. 2020 Sep 17;383(12):1117-1128. doi: 10.1056/NEJMoa2001180. PMID: 32937045.

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lupus and sleep: Strategies to sleep better

12/14/2020

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Simple, effective strategies to improve your sleep

Sleep hygiene recommendations for lupus patients

Tips on better sleep

We call this important list "sleep hygiene" techniques.

How to use:
Sit down, read the list, use a yellow highlighter on anything you are not doing regularly.
Work faithfully on incorporating every single thing into your life.
If you then still have trouble sleeping, talk to your doctor. Ask if you should get a sleep study to figure out if you have a treatable sleep disorder

Get other advice for living better with lupus from "The Lupus Secrets"

Thank you Kelli of "More than Lupus" for posting the Ask Dr. T question

Sleeping advice for lupus patients sleep hygiene

Sleep Hygiene Techniques

- Maintain a regular sleep schedule; get up and go to bed the same time daily even on non-work days and holidays.
- Reduce stress in your life.
- Get exposure to light first thing in the morning to set your biological clock. Consider using a non-UV source of light exposure such as the Philips goLITE or the Miroco non-UV light.
- Exercise daily; mornings and afternoons are best. Don’t exercise right before bedtime.
- Avoid naps late in the afternoon or evening.
- Finish eating two to three hours before bed; a light snack is fine, but avoid foods containing sugar as it can stimulate the mind and interfere with falling asleep.
- Limit fluids before bed to keep from getting up to urinate throughout the night.
- Avoid caffeine six hours before bed.
- Do not smoke; if you do, don’t smoke for two hours before bed; nicotine is a stimulant.
- Avoid alcohol two to five hours before bed; alcohol disrupts the sleep cycle.
- Avoid medicines that are stimulating (ask your doctor).
- Avoid stimulating mind activities for a few hours before bed (reading technical articles, listing tasks to do, trouble-shooting, paying bills, etc.).
- Have a hot bath one to two hours before bed; it raises your body temperature and you will get sleepy as your temperature decreases again afterward.
- Keep indoor lighting low for a few hours before bed.
- Establish a regular, relaxing bedtime regimen (aroma therapy, drink warm milk, read, listen to soft music, meditate, pray, do relaxation/breathing exercises).
- Ensure your sleeping environment is quiet and comfortable (comfortable mattress and pillows; white noise like a fan; pleasant, light smells).
- If pets ever wake you, keep them outside of the bedroom.
- Use the bedroom only for sleep and sex; never eat, read, or watch TV in bed.
- Never keep a TV, computer, or work materials in your bedroom.
- Go to bed only when sleepy.
- If you can’t go to sleep within fifteen to twenty minutes in bed, go to another room and read something boring under low light, meditate, pray, listen to soft music, or do relaxation/breathing exercises until sleepy.
- If you have dry mouth problems, use a mouth lubricant such as Biotene Mouth Spray before you go to bed.

Author

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

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Latest anti-inflammatory diet: for lupus and other autoimmune diseases

12/9/2020

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WARNING:

Following this lupus diet results in significant weight loss.
Do not follow this plan unless you can afford to lose weight.

Mediterranean Diet as an anti-inflammatory diet for lupus and autoimmune diseases

Anti-Inflammatory Diet for Autoimmune diseases

This is the latest handout I give to my own patients. It has information from some of the latest medical research regarding foods to eat and avoid in order to hopefully decrease inflammation in the body. It talks about anti-inflammatory foods to eat, which to avoid, intermittent fasting, prebiotics (such as resistant starches), and probiotics. As per the Lupus Secrets, do this along with taking your medications, exercising regularly, getting at least 8 hours of sleep each night, and protecting yourself from ultraviolet light.

If you find this helpful, please share with others.

There is growing evidence that eating a diet high in foods that decrease inflammation, while avoiding, or minimizing foods that increase inflammation, can help autoimmune diseases such as lupus and rheumatoid arthritis. One of the latest studies from the University of California, San Diego Medical Center showed that rheumatoid arthritis patients had significantly better disease control when sticking to this type of diet. Lupus studies show that diets rich in omega-3 fatty acids and low in omega-6 fatty acids can help disease activity in people with lupus as well as mice with lupus. Lupus mice also have better disease control when they eat a diet rich in "resistant starches." Resistant starches as discussed in the probiotics section below. Note that the Mediterranean diet has many of these anti-inflammatory recommendations. You can find information on the internet or ask your doctor for a copy of our Mediterranean diet.

oatmeal and yogurt probiotic foods for lupus diet

Eat omega-3 fatty acids. Limit omega-6 fatty acids

Increase intake of:
Omega-3 fatty acids (walnuts, flaxseed, chia seed, salmon, tuna, mackerel, sardines, avocado, sesame seeds, tahini seeds)
Green leaf vegetables (such as arugula, broccoli, cabbage, zucchini, brussel sprouts)
Anti-inflammatory vegetables (onion, carrots, pumpkin; eat garlic in moderation)
Enzymatic fruits (pineapples, mangos, papaya)
Anti-inflammatory spices (turmeric, black pepper)

Decrease intake of:
Omega-6 fatty acids (reduce meat intake to turkey or chicken twice weekly; eat more fish as noted above; avoid or at least limit red meats, fried foods, butter)

Tomatoes for an anti-inflammatory diet lupus diet

Should you avoid nightshade plant foods? Avoid gluten?

Controversial diet changes

Some experts recommend the following changes, while others do not due to insufficient data). One reason I am skeptical of this is because tomatoes are rich in lycopenes, a strong anti-oxidant (so, it seems like they should be healthy rather than harmful). This is one of those areas that needs more study.:

Decrease the intake of nightshade (solanaceae) vegetables (tomatoes, eggplant, potatoes) if you believe this. Personally, I would still eat them. However, like with any foods, if you predictably flare by eating them, then you should avoid them.

Decrease the intake of gluten products (instead of wheat bread and pasta, switch to rye bread, corn tortillas, quinoa/beet/bean/ or chickpea pasta). However, most experts recommend avoiding gluten only if you truly have celiac sprue (gluten hypersensitivity).
*** NOTE: These recommendations are not for people who have celiac sprue, gluten-sensitive enteropathy, or gluten sensitivity. Though these are lower in gluten than wheat breads and pastas, some (such as rye) can contain gluten.

alarm clock representing intermittent fasting for a lupus diet

Intermittent Fasting

Fasting has been shown to decrease inflammation in the body in numerous studies. Some lupus mice studies also show that fasting decreases lupus disease activity. Numerous animal models show that animals that eat a highly restricted diet live longer.

One easy way to fast is to do something called intermittent fasting. This form of fasting also lowers insulin spikes (so may decrease the risk of diabetes), causes weight loss, and may help extend life span.
An easy way to do intermittent fasting is to only start eating in the late afternoon, then stop when you go to bed. You only want to eat 8 or less hours a day, complete fasting for at least 16 hours (including your 8 hours of sleep). You are only allowed water, black tea, and black coffee while fasting. Go to YouTube to watch some helpful videos about intermittent fasting.

If you have diabetes, discuss with your doctor before doing intermittent fasting (especially if you are on insulin).
You should also exercise regularly to get the full benefits of intermittent fasting.

Petri dish with bacteria of the microbiome

The microbiome in autoimmune diseases:

We have trillions of bacteria living on and inside of us; all together it is called our "microbiome." The insides of our intestines and gastrointestinal tract contain the largest immune system organ of our body, and the constant interactions of the microbiome bacteria and our immune system can either cause beneficial effects when we have good (beneficial) bacteria in our microbiome, or abnormal effects that can actually cause increase autoimmune disease. Studies of the microbiome and autoimmune diseases such as RA and lupus are in its infancy. Many studies have been performed in animals with lupus and RA, and smaller studies have been done in humans. We have so much to learn, but we do realize that having good bacteria that decrease autoimmunity, and getting rid of bad bacteria that increase autoimmunity are very important. Here are some recommended practices that you can do that may help you.

1. Take great care of your oral health! Poor dental health can actually cause RA and make it worse, and now there is evidence that it can do the same with lupus (in fact, one study showed that treatment of periodontal disease in lupus patients improved their lupus disease activity significantly. Make sure and do the following:
- Floss every day (flossing picks are very handy to use)
- Brush twice a day
- If you have dry mouth, talk to your doctor about how to improve the much needed saliva in your mouth to increase good bacteria and decrease the bad.
- DO NOT SMOKE! (this is why smokers lose their teeth at a much younger age than nonsmokers)
- Chew on gum that contains xylitol (or use Xylimelts, or use mouth wash that contains xylitol eg TheraBreath Maximum Strength)
- Get your teeth cleaned every 6 months (every 3-4 months if you have dry mouth)

2. Improving the microbiome in the gut has less medical evidence behind it. It is probably important to do, but we lack good large studies in humans. However, increasing the amount of resistant starches in your diet may be beneficial.
- Resistant starches include cold oat meal (eg overnight oats), potato starch, green banana starch, potatoes that are cold after being cooked, and lentils
- These types of starches aren't digested well until the get into the large intestine where they begin to ferment. Then beneficial bacteria use these starches for food and interact favorably with the immune system and also decrease the numbers of bacteria that cause immune system problems
- Including a serving of resistant starches in your diet daily is probably a good idea.

Yogurt oatmeal and strawberries as probiotics for a lupus diet

Probiotics in autoimmune diseases:

Probiotics are live bacteria, touted to have beneficial effects by living within our intestinal system and interacting with our immune system. While probiotic supplements have been shown to have some benefit for gastrointestinal problems (such as irritable bowel syndrome), no human studies have proven benefit for autoimmune disorders yet. In fact, in animal research, some autoimmune disorders improve with some probiotic organisms while others actually worsen. Therefore, we do not recommend any probiotic supplements. Probiotics may be beneficial for the microbiome as above.

However, many foods are rich in natural probiotics, and thus far, there are no studies suggesting that any of these foods make autoimmune disorders worse. Therefore, you may want to consider the possibility of consuming a daily portion of any of the following probiotic rich foods:

Probiotic rich foods
Greek yogurt
Kefir
Kimchi (fermented, nonpasteurized)
Kombucha tea
Miso soup (warm, not boilded)
Tempeh
Sauerkraut, fermented, nonpasteurized (warm, not cooked too hot)
Fermented, nonpasteurized pickles
Dark chocolate (just a little, and NOT milk chocolate)
Cold green peas on salads
Olives
Natto (very healthy, but takes an acquired taste)
Beet kvass
Fermented beets
Cottage cheese containing live cultures (eg "Good Culture" and "Horizon organic")
Soft, aged cheeses (especially gouda; but also parmesan, cheddar and swiss; the longer the aging, the higher the probiotic content)

References:
Bustamante MF, et al. Contemp Clin Trials Commun 2020
Guma M, et al. Trial of diet to improve RA and impact on the microbiome. Presented at ACR Convergence 11/9/2020.
Zegarra-Ruiz DF, El Beidaq A, Iñiguez AJ, et al. A Diet-Sensitive Commensal Lactobacillus Strain Mediates TLR7-Dependent Systemic Autoimmunity. Cell Host Microbe. 2019;25(1):113-127.e6. doi:10.1016/j.chom.2018.11.009

Author

written by Donald Thomas, MD
author of "The Lupus Encyclopedia"
Arthritis and Pain Associates of PG County
301-345-5600
www.arthritispainpg.com

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free online zoom seminar

12/7/2020

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How to Manage Holiday STRESS!

Dr. Don Thomas will talk about how stress affects lupus and the immune system.

He will give practical advice on how to help decrease stress.
Although this is geared for lupus patients, it can be helpful for anyone dealing with stress... anyone with an autoimmune disorder.

PLEASE SHARE with others.

Link to register for the event:
https://support.lupus.org/site/Calendar/1433211554?view=Detail&id=102781&fbclid=IwAR1wQRXSZORU5QuSSiMe6wgaBWr_fDxMycYR1FTS7D-8A64H9DqluQyn_tg

Sponsored by the Lupus Foundation of America, Richmond VA chapter

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Vegetarian diet and lupus question

12/6/2020

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Ask Dr. T Question about lupus diet and vegetarians

Anti-inflammatory diet for lupus patients

For more detailed information regarding an anti-inflammatory diet see my other blog on DIET

Thank you to Kelli Roseta of "More Than Lupus" for producing "Ask Dr. T"

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Anti-inflammatory diet for autoimmune disease

12/6/2020

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Eating properly is important when you have lupus

Anti-inflammatory diet for lupus and autoimmune diseases

Diet used in 2020 rheumatoid arthritis study above
Slides above and below posted with permission of Dr. Monica Guma, MD (principal investigator of this research study. The reference is at the bottom)

At the American College of Rheumatology (ACR) meeting NOV 2020, Dr. Monica Guma of UCSD reported results of using an anti-inflammatory diet in the autoimmune disease, rheumatoid arthritis (rheumatoid arthritis). She used the diet posted above.

This is pertinent for lupus patients because lupus is also an autoimmune disease. Note that there are some anti-inflammatory diet studies in lupus mice and lupus humans that show positive effects. However, we need larger, bigger studies. This study is a step in the right direction (even though it is with RA instead of lupus).

She chose motivated RA patients. They stayed on their medications as well. They followed the above diet. They had to have active RA to enter the study. Disease activity was measured 2 weeks before the study, at the start of the study, then 2 weeks later. The bacteria in their stool (microbiome) was also measured!

Below is an example of a typical day of eating:

Anti-inflammatory diet daily example for lupus patients

How did the RA patients do on this anti-inflammatory diet?

After 2 weeks on the diet, there was improved disease activity (overall) with less tender and swollen joints.
Disease activity (measured by a research tool called the CDAI) was significantly decreased.
Below are the results after 2 weeks on the diet.

For the scientific minded... note the great "p values" for some of these measurements on the right.

Research results of an anti-inflammatory diet to treat rheumatoid arthritis and possible lupus

What did their gut microbiome do in response to the anti-inflammatory diet?

After 14 days, those RA patients who did better (had lower RA disease inflammation) on the anti-inflammatory diet ended up with a greater diversity of their microbiome. This suggests that the diet influenced their gut bacteria types as well as improved disease activity.

This adds evidence that we may be able to alter our gut bacteria with diet plus improve disease activity in autoimmune diseases! There is hope that diet could also possibly help other autoimmune diseases, such as lupus, in a similar way.

We absolutely need more research. Thanks to Dr. Guma and her team for helping to pave the way for more research on diet and autoimmune disorders. Below are her results of the microbiome changes in the study.

Microbiome changes after anti-inflammatory diet for rheumatoid arthritis and autoimmune disorders such as lupus

What should be in an anti-inflammatory diet for lupus and other autoimmune diseases?

This is my commentary:

Some of the recommendations of Dr. Bustamante (first two pics above) have quite a bit of research supporting their use (eating foods high in omega-3, avoiding omega-6, eating prebiotics) in autoimmune diseases such as lupus.

However, others have significantly less evidence (for example, avoiding solanaceae, which is nightshade plants, and eating gluten-free).

I suspect the latter food groups were included since these changes "may possible reduce inflammation."

We all look forward to more studies in autoimmune disorders, such as lupus.

Comments Welcomed
Click on COMMENTS above

What have you found to be helpful in an anti-inflammatory diet?
What do you recommend for a beginner?
Do you recommend any particular books that you found to be most helpful?

Author

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

REFERENCES:
Bustamante MF, et al. Contemp Clin Trials Commun 2020

Guma M, et al. Trial of diet to improve RA and impact on the microbiome. Presented at ACR Convergence 11/9/2020.

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A rheumatologist's experience: getting the COVID-19 vaccine

12/3/2020

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Read on. What was it like to get vaccinated? ... and some advice for lupus patients

A rheumatology researcher becomes a research study participant for the Pfizer COVID-19 vaccine

Dr. Kathryn Dao, a rheumatologist in Dallas, Texas, wrote about what it was like getting vaccinated for COVID-19 as a research study participant. I will include the link to her fascinating story below but will provide a short outline on some important points.

- It was Pfizer's placebo-controlled trial. How could she possible know she got the vaccine and not the placebo?
~ It is because she developed classic vaccine reaction symptoms after getting it
~ Out of interest, the name of the trial was:

the phase 3 trial of the Pfizer/BioNTech mRNA vaccine against SARS-CoV2 (protocol C4591001)

- How big was the research study and how long is it?
~ The goal was to get 44,193 subjects
~ Subjects are expected to be followed for around 2 years each

About the COVID-19 vaccine

- How was the vaccine given?
~ 1st dose followed by a 2nd dose 21 days later

~ What is in the vaccine?
~ It contains RNA (ribonucleic acid) from the coronavirus that causes COVID-19
~ After the injection, our immune system should see this foreign RNA and learn how to make antibodies against it for future protection
~ Then, if this person is exposed to the coronavirus, their immune system will recognize the COVID-19 RNA and can launch an attack against it and hopefully prevent infection

Lupus patient getting the COVID-19 vaccine

Dr. Dao's COVID-19 vaccine experience

- What was it like to get the shot?
~ The vaccination was given in her left upper arm muscle (like a flu shot). She says it was the easiest shot she ever had: no pain, no blood, not even a red dot.

- So how does she know she got the actual vaccine and not a fake shot (placebo)?
~ Just 2 hours later, her muscles ached, and her temperature rose.
~ She had trouble sleeping that night due to a painful arm and headache. In the AM her temperature was 100.3
~ She felt badly, so she took 400 mg ibuprofen (Motrin) with marked improvement. She took it every 8 hours and felt great. She was able to stop the ibuprofen after 24 hours.
~ For the 2nd shot, she started taking ibuprofen before the shot and every 6-8 hours afterward. She still got a slightly sore arm, mild fever, and headaches. She experimented with acetaminophen (Tylenol). It helped the fever but not the sore arm. She had to keep taking these for several days. Day 4 - she felt amazing!
~ A placebo would not have caused these symptoms, so she knows she got the vaccine.

Results of the COVID-19 vaccine research clinical trials

- What were the Pfizer study results?
~ As of 11/13/20, 41,135 participants received their 2nd shot. Half got placebo, half got the vaccine.
~ There were 162 COVID infections in the placebo group
~ There were only 8 in the vaccine group!
~ The vaccine was 95% effective. This is just amazing!
~ The effectiveness was similar among different ages, genders, ethnicities/races.

- What were the side effects of the vaccine?
~ Fatigue in 4%
~ Headache in 2%
~ Side effects were more common in younger adults (note that this is similar to what happens with the Shingrix shingles shot: older people are less likely to get side effects)

Will I get the vaccine?

You better believe it! I will be 1st in line!

I will take both Tylenol and Aleve or Advil (Tylenol works through a different mechanism than Aleve and Advil do. Using them together theoretically may work better)
I'll advise my patients to do the same (for those who can safely take them)
CAUTION: Do NOT do this without asking your doctor first.

Ibuprofen to prevent side effects from the COVID vaccine for lupus patients

Dr. Thomas will be 1st in line to get the COVID-19 vaccine!

- I've had too many patients tell me about their relatives and loved ones who died from it ... spouses, siblings, parents, God-children, nieces, nephews, best friends

~ This is real, everyone!
~ We need to have over 75% of us get vaccinated in order to achieve what is called "herd immunity"
~ Please do your part and get vaccinated.
~ If you don't believe in protecting yourself with vaccines, change your mindset...

Do it out of love for your loved ones. If you get vaccinated, you lower the chances of spreading it to your loved ones.

- Will I recommend it for my patients who have autoimmune disorders such as lupus, or those who are on immunosuppressant drugs?
~ Probably. However, I will go by what the expert recommended guidelines are.
~ One problem is that they probably did not include people with lupus and who are on drugs that suppress the immune system into the studies.
~ However, I suspect the experts will recommend it since all other non-live vaccines are safe for our patients, and this is not a live vaccine.

Dr. Dao stated, "The relief was something I did not anticipate; it was a glimpse of the end of the pandemic. " She urged others to follow her footsteps and get the vaccine so we can end this pandemic and get back to a normal life.

Here is a link to Dr. Dao's very interesting personal account. It is a must read on RheumNow:
https://rheumnow.com/blog/my-experience-covid19-vaccine-trial-participant

Lupus patients should get the COVID-19 vaccine to stop it from spreading

Let's get back to a normal life! We can all do our part!

Please don't believe all the fake news, and misinformation that you read and see about COVID-19. It just makes me angry to see and hear it. Calling this a hoax when we health care workers see the devastation constantly.

I wish that everyone who minimizes this, or calls it a hoax were forced to help care for the devastated families so they can see these are real people behind the numbers.

Stay safe everyone ... and please get vaccinated when it is available.

Shopping with mask and gloves during COVID-19

Wouldn't it be nice to shop normally again?

Wouldn't it be nice to get together with loved ones, hug, kiss, and not have to do Zoom meetings?

Please comment above, what do you think?

Author

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

5 Comments

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

0 Comments

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

0 Comments

Bacteria in the urine increases lupus flares!

11/27/2020

2 Comments

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.

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!

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.

2 Comments

how severe is your lupus?

11/22/2020

8 Comments

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.

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

8 Comments

Learn about Lupus nephritis (kidney inflammation)

11/14/2020

0 Comments

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

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!

2 Comments

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?

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

3 Comments

live facebook lupus seminar: Join us!

11/4/2020

2 Comments

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"

2 Comments

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

0 Comments

October 28th, 2020

10/28/2020

0 Comments

IF YOU HAVE LUPUS OR ARE A CAREGIVER:

You can help with an easy online lupus research study!

Here's how!

Woman with lupus helping lupus research for the Lupus Foundation of America

We need more lupus research to help find better treatments and hopefully a cure for lupus

If you are not already doing so, make sure you are maximizing your life style in ways that will make it easier for you to fight against and live with your lupus. Make sure and do everything mentioned in my "Lupus Secrets"

The Lupus Foundation of America has a new lupus research initiative where people with lupus and their caregivers (wives, husbands, partners, etc) can share their experiences and help us learn more about lupus. They ask that you add information online at the RAY site throughout the year as your situation changes. Please help us fight against lupus so we can end up all winning!

RAY stands for "Research Accelerated by YOU"
Yes! You can make a difference!
You must live in the US to participate.

To participate in the RAY lupus research, you can easily do so. Go to the Lupus Foundation of America's online data collection site at lupus.org/RAY

Please also SHARE this post with everyone you know who has lupus. Let's help LFA!

Author

Don Thomas, MD
Author of the "Lupus Encyclopedia" and strong advocate for all lupus patient organizations around the world!

0 Comments

Prevent early tooth loss when you have dry mouth from lupus or Sjogren's syndrome

10/14/2020

0 Comments

Would you like to help lower your risk of losing teeth from dry mouth?

Saliva production is very important in keeping bad bacteria away and keeping our teeth and gums healthy. There are things you can do to help.

Dry mouth from lupus and Sjogren's syndrome causing low pH, dental cavities, and tooth loss

Below is a copy of an email I received from the Sjogren's Foundation on 10/14/2020. I wanted to share this offer with others who could benefit:

The Sjogren's Foundation recommends BasicBites to help decrease the risk for dental cavities and tooth loss for people with decreased saliva formation. Below is a copy of an email I got from them about the product. (note that I get no compensation for making this recommendation. I just happen to think it is a good one). MAKE SURE TO USE PROMO CODE: sfsave5

The Sjögren’s Foundation is excited to share with you information about the revolutionary product BasicBites®. These delicious 15 calorie chocolate soft chews are clinically shown to maintain enamel health.

As you know, the Foundation likes to share with you information about new products and services that are available for Sjögren’s patients as well as those that offer discounts to Sjögren’s patients. We hope you’ll take time to learn more about this product and learn if it is right for you!

Take $5 Off Your Purchase - Use Promo Code sfsave5

Offer ends Oct. 31st, 2020
All other discounts still apply.

Recommended by leading dental professionals, multi-action BasicBites® are essential for individuals with dry mouth. Dry mouth can wreak havoc on your teeth by creating an acidic oral environment that also favors harmful plaque bacteria. BasicBites® work differently than other oral care and dry mouth products. These delicious soft chews coat and replenish teeth with key nutrients also found in healthy saliva - arginine bicarbonate and calcium carbonate. These vital teeth protecting nutrients can be in very short supply if you have dry mouth.

Basic Bites helping to prevent early tooth loss from dental cavities from lupus and Sjogren's syndrome dry mouth

BasicBites® nourish the beneficial pH-raising bacteria discovered in dental plaque. This natural prebiotic approach instantly activates and boosts your mouth’s natural defenses that nurture the beneficial pH-raising bacteria discovered on tooth surfaces, while crowding out the harmful acid producing plaque bacteria. BasicBites® immediately counteract and buffer harmful plaque acids, enrich and fortify enamel and support a sustained healthy oral environment.

Just two BasicBites® a day are clinically shown to maintain enamel health. The revolutionary saliva mimicking technology in BasicBites® was developed by internationally recognized scientists in the Department of Oral Biology at Stony Brook University School of Dental Medicine.

BasicBites® supercharge your mouth’s natural defenses... just like healthy saliva.

Nourish beneficial pH-raising bacteria discovered in dental plaque
Counteract and buffer harmful sugar acids
Enrich and fortify enamel
Maintain a healthy oral pH environment
Now available in chocolate and caramel flavors

Treat yourself and your teeth! To learn more and purchase BasicBites® soft chews, please visit www.basicbites.com/sjogrens or call 800-863-9943. Free shipping and discount offers available. Satisfaction Guaranteed.

People commenting on blog post about dry mouth in lupus and Sjogren's syndrome

Please comment by clicking "Comments" at the top then fill out "LEAVE A REPLY" ... Please share this with others who have lupus, Sjogren's syndrome, or dry mouth

Author

Donald Thomas, MD
Lupus Educator and author of "The Lupus Encylcopedia"

0 Comments

Participate in this lupus survey if you live in the USA

10/13/2020

4 Comments

The Lupus Foundation of America wants to learn more about the difficulties in being diagnosed with lupus

Click here to participate in the Lupus Foundation of America Survey:
The survey is about your experience with being diagnosed with lupus

Survey about being diagnosed with lupus and The Lupus Foundation of America

After you take the survey, please consider commenting about the survey and about your experience with getting diagnosed. Newer and better tests are being developed. Doctors know that it can be very hard and frustrating. Using surveys like this can help us track over time how long it takes and what the diagnostic journey is like.

Comments about the experience with being diagnosed with lupus

Author

Donald Thomas, MD
lupus educator and author of "The Lupus Encyclopedia"

4 Comments

Why include sulfa antibiotic allergies in your lupus medication list?

9/26/2020

12 Comments

Lupus Secrets: List sulfa antibiotics in your allergy list if you have lupus

Lupus medication list with drug allergy list including sulfa and Bactrim antibiotics

Lupus patients are more likely to have allergies to antibiotics

Many systemic lupus erythematosus (SLE) patients report numerous drug allergies. However, studies do not show an increased amount of allergies than non-lupus patients (other than antibiotics). SLE patients have higher rates of allergies and intolerances to penicillins, cephalosporins, sulfonamides, and the antibiotic erythromycin. The most important antibiotic intolerance is that of sulfonamide (often called “sulfa”) antibiotics. This most commonly refers to the antibiotic trimethoprim-sulfamethoxazole (Bactrim and Septra).

Sulfur versus sulfonamides versus other sulfa drugs and lupus

The element called sulfur exists in all of us, so none of us are allergic to sulfur. Many different molecules contain sulfur to include sulfates, sulfites, and sulfonamides. Lupus patients have an increased risk of antibiotic sulfonamides (specifically Bactrim, trimethoprim-sulfamethoxazole) flaring their lupus. Sulfonamide antibiotics are very different than sulfates, sulfites, and others. These are safe for lupus patients to take. There are some non-antibiotic sulfonamides (furosemide, hydrochlorothiazide, acetazolamide, sulfonylureas used for diabetes, and celecoxib). However, these do not appear to increase lupus flares and are safe for lupus patients to take (unless they just happen to have an allergy to that particular drug).

Sulfa antibiotics can cause significant lupus flares (list is as an allergy!)

Around one-third of lupus (SLE) patients have reactions to Bactrim, and it can cause lupus flares as well. These reactions are more common in Caucasians, those with low lymphocyte counts (lymphopenia), and anti-SSA positive patients. Still, they can occur in any lupus patient. They especially can cause flares of fever, sun-sensitive rashes, and low blood cell counts. Sometimes these flares can be severe. There are so many other antibiotics now available that sulfonamide antibiotics can usually be avoided in SLE patients.

I, and most lupus experts, recommend that all lupus patients always carry an up-to-date medication list (similar to the first image, above) and that it also includes an allergy list that includes “sulfa antibiotics.” This can protect you if you ever get sick and end up in the emergency room where it can be hard to remember to tell your entire medical history. While lupus patients are more likely to be intolerant of the antibiotics penicillin, cephalosporins, and erythromycin, these do not typically cause lupus flares, and the vast majority of SLE patients tolerate them well. Therefore, they do not need to be avoided in lupus patients who are not allergic to them.

Learn and abide by the Lupus Secrets to live a healthier, longer life with SLE

This is my first blog post (as I stated I'd do in my 1st post) with one of my Lupus Secrets. It is such an important one! I will discuss the other "Secrets" in my blog in the future.

PLEASE SHARE THIS POST WITH OTHER LUPUS PATIENTS ... HELP GET THE WORD OUT!

Background of "The Lupus Secrets":

A long time ago, I realized that most patients and most physicians were not familiar with all the important things that lupus patients can do themselves that improve their health and lives. So, I made a list and called them “The Lupus Secrets" that addresses these important things. I called them "The Lupus Secrets" not because I wanted them to be a secret, but because they appeared to be a secret since most people (and doctors) did not know about all of them.

I regularly update this list as our knowledge of lupus improves. I give this list to all my patients, and encourage them to follow it. Most of my SLE patients are in remission or low disease activity, and I care for over 200 people who have SLE. I attribute my patients’ utilization of “The Lupus Secrets” as an important tool in achieving this goal. Please download a copy. Each recommendation has medical literature to back it up (check out the references below for this "Secret"), though each varies in the strength of evidence.

Author

Don Thomas, MD
Author of The Lupus Encyclopedia

References:
Petri, M, Allbritton, J. Antibiotic allergy in systemic lupus erythematosus: a case-control study. J Rheumatol 1992; 19: 265–269.
Wozniacka A, Sysa-Jedrzejowska A, Robak E, Samochocki Z, Zak-Prelich M. Allergic diseases, drug adverse reactions and total immunoglobulin E levels in lupus erythematosus patients. Mediators Inflamm. 2003;12(2):95-99. doi:10.1080/0962935031000097709

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What is your experience with sulfa antibiotics?
Please click "Comments" just below the main title or if you are on the main post page, comment at "LEAVE A REPLY" below the post.

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a new lupus test announced by the lupus foundation

9/23/2020

5 Comments

The aiSLE DX Flare Risk Index test

New lupus test for lupus flares announced by The Lupus Foundation

The Lupus Foundation of America, in its continuous quest to advocate for better care of lupus patients, just announced a new laboratory test that can help people who have systemic lupus erythematosus (SLE).

The test is called the aiSLE DX Flare Risk Index, produced by Progentec Diagnostics, a company that specializing in lupus. This is the first test in their "pipeline" (the yellow "01" part of the diagram above) of lab tests, designed to modernize and improve the care of SLE patients. Progentec had a press release this week about the lab test... read it here

The test measures numerous molecules of the immune system called cytokines and chemokines. Some of these cytokines increase immune system activity in SLE, while others decrease it. Studies have shown (at the Mayo Clinic and OMRF) that before lupus flares, we can predict the chances of it occurring beforehand. This is exciting. Up to now, whenever we get labs on our lupus patients, it tells us how patients are doing at this moment. I like the way that Dr. Chaim Putterman (a lupologist) put it:

"“The management of lupus symptoms has traditionally involved a regimen of reactive protocols. A test that assesses the likely risk of the onset of a flare is one of the first proactive measures available to the rheumatological community. The empirical data derived from such a test potentially has tremendous value in helping devise the right treatment and care for lupus patients.”

- Chaim Putterman, MD, Professor of Medicine and Microbiology & Immunology at the Albert Einstein College of Medicine

New lupus test being performed in lab by a laboratory technician

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.

5 Comments

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RECEIVE NEWS, BLOG ARTICLES AND UPDATES

The Science of how Stress affects the Immune System
Also: Tips on decreasing stress

COMMENT above: how do you deal with and prevent stress?

What advice do you have for others?

1st drug ever FDA-approved to treat lupus nephritis

Historic mile-stone!

WARNING:

Following this lupus diet results in significant weight loss.
Do not follow this plan unless you can afford to lose weight.

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

Are they safe to take when you have lupus?

"Ask Dr. T!" question of the week

Please do not take Echinacea

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

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

QUESTIONS THAT MATTER TO PATIENTS!

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

IF YOU HAVE LUPUS OR ARE A CAREGIVER:

You can help with an easy online lupus research study!

Would you like to help lower your risk of losing teeth from dry mouth?

Saliva production is very important in keeping bad bacteria away and keeping our teeth and gums healthy. There are things you can do to help.