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Lupus Encyclopedia

intravenous immunoglobulin (IVIG) for lupus

4/4/2021

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A drug made from up to 100,000 healthy volunteers!

Lupus patient getting intravenous immunoglobulin
Intravenous (IV) means getting a medicine delivered into your vein
​
Intravenous Immune Globulin (IVIG)

​Immune globulins (also called immunoglobulins) are antibodies. A large number of antibodies given in IVIG may help in some autoimmune disorders such as polymyositis and dermatomyositis. However, IVIG is not commonly used for SLE. It is useful in people who have a deficiency in IgG immune globulins (medically known as hypogammaglobulinemia) and have recurrent infections due to this. A person with hypogammaglobulinemia can benefit significantly from IVIG because it replaces the absent IgG globulins needed to fight infections.
​

Studies evaluating IVIG use in cutaneous lupus (chapter 8), lupus nephritis, muscle inflammation, low blood cell counts (to include myelofibrosis), lupus lung inflammation, myocarditis, arthritis, severe antiphospholipid syndrome, and neuropsychiatric lupus, have had encouraging results. A small 2012 study also suggested that it may help prevent congenital heart block in women with lupus who are SSA or SSB antibody positive. However, larger studies will be needed to see if IVIG should be used more often to treat lupus.
A blood donor to make IVIG for lupus patients
It can take up to 100,000 healthy blood donors to produce one dose of IVIG!

IVIG is produced from the antibodies of healthy blood donors. It takes anywhere between 1,000 and 100,000 donors for one dose. The preparation undergoes treatments to kill any potential germs and is thoroughly tested before using it for therapy.

Antibody that makes up IVIG
Cartoon depiction of an immunoglobulin molecule. Photo: TimVickers at Wikipedia

How IVIG works:
IVIG can decrease immune system overactivity.

What benefits to expect from IVIG: IVIG can decrease infections in people with low levels of IgG globulins. It can help the conditions noted in the paragraph above. In some people, it works rapidly, even within days after the first treatment.

How IVIG is given: Usually given as an intravenous (IV) infusion once or twice a month. A self-injectable form that can be given at home is available.

If you miss a dose of IVIG: Reschedule as soon as you realize that you missed your dose, then reset your schedule from that point. Consult with your prescribing doctor to double-check these instructions, but these guidelines will be enough for most people.

What needs to be monitored while you get IVIG: You will need to have periodic lab tests, including blood cell counts and kidney function tests.

Reasons not to take IVIG: Many IVIG brands are unsafe to receive if you have a deficiency in IgA globulins. Your IgA globulin level can be measured using a blood test similar to the one that measures IgG globulin levels. Gammagard S/D and Polygam brands of IVIG are generally safe to use if you are IgA deficient. Pre-existing heart disease, kidney disease, and a history of blood clots may increase your risk of having these sorts of problems on IVIG. Discuss these possibilities with your doctor.

If you have severe IgA deficiency, you should receive IVIG that does not contain IgA, or it should be provided in a hospital setting. Patients with severe IgA deficiency can sometimes develop severe allergic reactions (anaphylaxis) to IVIG containing IgA immunoglobulins. 

While taking IVIG therapy: See your doctor regularly for appropriate blood tests. Seek medical attention immediately if you develop a red, painful, swollen leg; shortness of breath; chest pain; slurred speech; or arm or leg weakness.

Vaccines and IVIG: No need to stop drug or time dosing with inactivated vaccines (such as for influenza, pneumonia, and COVID-19). IVIG may decrease the response to some live vaccines. Ask your doctor about timing with any live vaccines (such as Zostavax, yellow fever, MMR, and others). 

Pregnancy and breastfeeding while on IVIG: IVIG can be used for severe lupus flares during pregnancy. Some think it may help prevent congenital heart block progression due to anti-SSA antibodies.
It can be used during breast-feeding.

Older people and IVIG: There may be an increased risk for side effects such as kidney problems, heart problems, and blood clots.

What to do at the time of surgery with IVIG: IVIG can potentially increase blood clots and probably should not be used close to the time of surgery. Check with the prescribing rheumatologist and infusion doctor for more information.

Potential Side Effects of IVIG


Nuisance side effects 
Mild infusion reactions (headache, muscle and joint aches, fever, hives, chills, stomach upset, nausea, abdominal pain)
Headaches
Fatigue
Elevated liver enzymes
Anemia and low white blood cell counts
Rash, skin vasculitis


Serious side effects
High blood pressure = common, treated with blood pressure medicines
Severe allergic reaction (anaphylaxis, low blood pressure, wheezing) = uncommon, treated by the nurses during the infusion
Severe headache, aseptic meningitis = uncommon. May be prevented with antihistamines, steroids, and pain medicines. May need to stop medicine.
Kidney failure = rare
Increase in lupus flares = rare
Blood clots = rare

Side effect incidence key (approximations, as side effects can vary widely study to study): rare < 1% occurrence; uncommon 1%–5% occurrence; common > 5% occurrence

If you have been treated with IVIG, what was your experience like? Please share in the Comments section above

Author

The above is an excerpt from "The Lupus Encyclopedia" by Johns Hopkins University Press. This is a preliminary draft for the 2nd edition, before print

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

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can more sunspots in 2025 lead to milder lupus?

3/27/2021

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A Johns Hopkins Lupus Clinic study suggests so...

Largest sunspot in 2014 picture by NASA may predict lupus flares
2014 photo by NASA showing an 80,000 mile long sun spot (the length of 10 Earths side by side). Photo source Wikipedia Commons and NASA, Greenbelt, MD

Sunspots related to lupus activity? Are the Johns Hopkins doctors crazy?

- They are not crazy. I know George Stojan, MD and Dr. Michelle Petri, MD well. They are two of the smartest lupologists in the world. 
- Previous research in Germany suggested health changes related to magnetic storms and sunspots (specifically while studying heart attacks by Halberg F, et al.) 
- The Lupus Clinic at Johns Hopkins compared disease activity in their center from 1996 to 2020 and compared it to solar cycles, sunspots, and geometric disturbances.
- They found that increased sunspots (called solar maximum in the solar cycle) was followed by lower disease activity on average in their patients. 
- Increased geomagnetic activity was also associated with lower disease activity.
- This is another study suggesting how important our environment is regarding lupus. 


When will there be milder lupus activity as predicted by sunspots?

- Of course, this is all hypothetical, and this research needs to be reproduced.
- If it is correct, our most recent time of fewer sunspots was DEC 2019 (the least solar activity in 100 years)
- NASA predicts that solar maximum will occur in July 2025 with 115 sunspots (179 is the average)
- The previous solar maximum was in APR 2014 with 114 sunspots. Since Dr. Stojan's research included that sun cycle, this upcoming cycle should be similar.

- Therefore, SLE patients may look forward to the Fall and Winter, Northern Hemisphere (this was a Northern Hemisphere study) of 2025 as a period of having milder lupus attacks.


Note... this is all very interesting, but I would not put my money on it until further research is done

Author

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

References:
Stojan G, Giammarino F, Petri M. Systemic lupus Erythematosus and geomagnetic disturbances: a time series analysis. Environ Health. 2021 Mar 16;20(1):28. doi: 10.1186/s12940-021-00692-4. PMID: 33722240; PMCID: PMC7962208.
​

Halberg F, Cornélissen G, Otsuka K, Watanabe Y, Katinas GS, Burioka N, Delyukov A, Gorgo Y, Zhao Z, Weydahl A, Sothern RB, Siegelova J, Fiser B, Dusek J, Syutkina EV, Perfetto F, Tarquini R, Singh RB, Rhees B, Lofstrom D, Lofstrom P, Johnson PW, Schwartzkopff O, the International BIOCOS Study Group. Cross-spectrally coherent ~10.5- and 21-year biological and physical cycles, magnetic storms and myocardial infarctions*. Neuro Endocrinol Lett. 2000;21(3):233-258. PMID: 11455355.

NASA: 
What Will Solar Cycle 25 Look Like?
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hot off the press: lupus and covid-19 vaccines

3/25/2021

2 Comments

 

Latest evaluation and recommendations: 
Lupus Science & Medicine

Newspaper on fire about lupus patients and COVID-19 vaccines
Hot off the press from Lupus Science & Medicine

SARS-CoV-2 vaccines in patients with SLE
Link and reference below to the research studies

Summary of some main points (but I encourage you to read the article):

- This article is written by some of the world's experts in lupus 
     - Dr. Joan Merrill, Dr. Anca Askanase, Dr. Wei Tang, and Dr. Leila Khalili


"... the risks of not receiving the vaccine are far greater at the present time."

- The lupus experts also state,
     "Patients with autoimmune rheumatic diseases should receive the COVID-19 vaccines and should be prioritised before the general population." 
- Other vaccines have been shown to be safe in lupus patients.
- They recommend temporarily stopping or changing the dosing schedule on some immunosuppressant drugs, such as methotrexate, rituximab (Rituxan), abatacept (Orencia), and JAK inhibitors (Xeljanz, Olumiant, Rinvoq)

     - They recommend following the recommendations of the American College of Rheumatology (click on link)

- They recommend that doctors may want to consider monitoring antibody levels after the vaccine.
- Since we do not know how well lupus patients, patients with other autoimmune diseases, and immunosuppressed patients will respond to the vaccines, they should continue strict social distancing.
- The above recommendations are made without research regarding specifically these RNA vaccines. However, after evaluating all the data, The American College of Rheumatology and these lupus experts recommend vaccination in patients with autoimmune rheumatic diseases. 


What are the risks of COVID-19 infection when lupus patients get infected?

- They are not at higher risk for infection from the novel SARS-CoV-2 Coronavirus.
- However, they are at higher risk of hospitalization than the general population. 
- COVID-19 infection may even increase lupus flares.

Please get your vaccine.  I got mine and I recommend it to all my patients. 
This is not a substitute for your doctor's advice. Please check with your physician first. 

Author

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

References:
Tang W, Askanase AD, Khalili L, et al. SARS-CoV-2 vaccines in patients with SLE. Lupus Science & Medicine 2021;8:e000479. doi: 10.1136/lupus-2021-000479

​American College of Rheumatology (ACR) COVID-19 Vaccine Clinical Guidance Task Force. COVID-19 vaccine clinical guidance summary for patients with rheumatic and musculoskeletal diseases, 2021www.rheumatology.org/Portals/0/Files/COVID-19-Vaccine-Clinical-Guidance-Rheumatic-Diseases-Summary.pdf. Available: https://www.rheumatology.org/Portals/0/Files/COVID-19-Vaccine-Clinical-Guidance-Rheumatic-Diseases-Summary.pdfGoogle Scholar
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melatonin: lupus and autoimmune disease- safe?

3/23/2021

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There is no evidence that it is unsafe in lupus: read on!

Melatonin being produced by the pineal gland in lupus
Melatonin is produced by the pineal gland in the brain when there is less light in the evening. Photo: Wikipedia "Melatonin" by Srruhh
Updated 4/10/21

Why do people with lupus think it is unsafe to take melatonin?

It is because there are outdated websites and patient education pages that state this. It even occurs on highly-acclaimed sites such as the Mayo Clinic.

How can the Mayo Clinic be wrong?
Most likely: there are tons of patient education pages that were produced a long time ago.
There is probably no one who polices and up dates them.
Certainly the doctors are way too busy to do this: they are taking care of patients and doing research.


Theoretically, melatonin may improve the immune system in lupus
     and other autoimmune diseases


- One problem in lupus is that there are lower numbers of important white blood cells called Tregs (regulatory T-cells).
- Tregs help to normalize the immune system and prevent overactivity.
- With less Tregs, bad B-cells that make dangerous lupus autoantibodies (such as anti-dsDNA) can live a very long time (and even forever, "immortal").
- Melatonin does effect the immune system. One of the things it can do is increase these important Tregs that could be helpful in lupus and other autoimmune diseases
- The 2013 research article referenced below by Lin GJ et al and the 2019 article by Zhao et al go into detail about this
Lupus mouse in laboratory
There are mice that always get lupus and they are used in research to learn more about how to help people with lupus

What happens to lupus mice when they are given melatonin

- When melatonin is given to female mice that are prone to getting lupus, it prevents them from getting lupus!
- This was shown in a 2010 study by Zou LL et al and another in 2008 by Jimenez-Caliani AJ et al (referenced below)

How about humans?

 - There are no studies of using melatonin in people with lupus.
- This is a huge reason why it is incorrect to tell people with lupus not to use melatonin. There is no evidence to support that recommendation.
- However, there is a study in people with rheumatoid arthritis (a related autoimmune disease).
     - Melatonin did NOT worsen rheumatoid arthritis in these patients (Maestroni et al, referenced below)

_________________________________________________________________________

BOTTOM LINE:

I do not ask my patients with lupus to avoid melatonin.
There is actually more evidence that it may be beneficial rather than harmful.
Lupus patient education websites should remove their recommendations to avoid melatonin.
​These sites and pages are outdated.

Author

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

REFERENCES:
​https://pubmed.ncbi.nlm.nih.gov/31345729/
​https://pubmed.ncbi.nlm.nih.gov/23727938/
https://pubmed.ncbi.nlm.nih.gov/18507713/
https://pubmed.ncbi.nlm.nih.gov/20706659/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2432495/
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Know your lupus labs: anti-ssa

3/21/2021

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What is anti-SSA antibody?

Anti-SSA (anti-Ro) in a lupus patient
What the lab technician sees under the microscope when testing a patient for anti-SSA antibodies. These are human epithelial cells to which blood was added from a patient who has anti-SSA antibodies, proving that that person is positive for anti-SSA. Photo credit below

Know your labs!

I recommend that all lupus patients get copies of their labs every time they are done. Look up any abnormal results from a reliable source to know what they mean. If you cannot find a reliable source, then ask your doctor.

Remember... Knowledge is Power!

So, let's talk about anti-SSA (also called anti-Ro).
Measuring anti-SSA antibodies in lupus patients. Lab tubes full of blood
Anti-SSA is measured as a blood test in red-top tubes
​Anti-SSA antibody: Also called Anti-Sjögren’s Syndrome A, Sjögren’s Anti-SS-A, Ro Antibody

Why is anti-SSA also called anti-Ro?

Anti-SSA and anti-SSB antibodies were first discovered in 1961 in people who had Sjögren’s syndrome. This systemic autoimmune disorder attacks the body's moisture-producing glands, commonly causing dry eyes and dry mouth. The medical terms for them are “Sjögren’s syndrome-A” and “Sjögren’s syndrome-B” antibodies (or SSA and SSB for short). In 1969, another laboratory described antibodies in people who had lupus and named them anti-Ro and anti-La. “Ro” and “La” were the first two letters of the last names of the lupus patients in whom the antibodies were initially found (Robert and Lane respectively, according to Dubois’ Lupus 9th edition). Researchers later showed that anti-SSA was the same as anti-Ro and that anti-SSB was the same as anti-La. These terms are now interchangeable, with anti-SSA meaning the same thing as anti-Ro and anti-SSB meaning the same thing as anti-La.

How often does it occur?

Anti-SSA is more commonly positive in SLE patients than anti-SSB. SSA is positive in 20% to 60% of people who have SLE (depending on the patient population and the laboratory method used to detect the antibodies). Anywhere from 75% to 95% of people who have Sjögren’s syndrome are positive for this antibody. It can be present in any of the systemic autoimmune diseases and nonautoimmune conditions.
Subacute cutaneous lupus erythematosus (papulosquamous or psoriasiform type) in a systemic lupus patient with high positive anti-SSA
Subacute cutaneous lupus erythematosus (papulosquamous or psoriasiform type) in a systemic lupus patient with high positive anti-SSA (photo by Don Thomas, MD, shared with patient's signed permission)

Some things may occur more often in people positive for anti-SSA antibodies

People who have SLE (systemic lupus erythematosus) and are anti-SSA positive have an increased risk of developing rashes with sun exposure (especially subacute cutaneous lupus), inflammation of the lungs (pneumonitis), shrinking lung syndrome, inflammation of the liver (hepatitis), inflammation of the pancreas (pancreatitis), inflammation of the heart (myocarditis), low platelet counts (thrombocytopenia), low lymphocyte counts (lymphopenia), and an overlap syndrome with Sjögren’s. 

IMPORTANT NOTE: From the list above, the most important ones are sun-sensitive rash and
Sjögren’s. Most do not develop the other problems, but are listed for your knowledge. Your doctor will monitor your liver enzymes and blood counts (hopefully every 3 months) and make sure to let your doctor know if you get chest pain, shortness of breath, bruising, rash, dry mouth or dry eyes.

Anti-SSA positive patients should particularly avoid ultraviolet light and become UV protection fanatics. Please download and follow my UV protection handout from this page: 

https://www.lupusencyclopedia.com/lupus-secrets.html

ANA-negative SLE patients and anti-SSA

Although it is rare, some people who have SLE and are negative for ANA are positive for SSA antibody. If someone is thought to have SLE, but their ANA is negative, doctors should check for SSA antibodies. A newer ANA test, called “HEp-2000 ANA” (by a laboratory called Immuno Concepts in Sacramento, California), may be better at showing ANA positivity in these patients who are SSA antibody positive. 

Anti-SSA can become positive years before SLE occurs

SSA antibody can be positive in someone many years before they develop lupus or Sjögren’s. It is one of the earliest antibodies to appear in many patients. This was figured out from blood samples of Army soldiers at the old Walter Reed Army Medical Center (Washington, DC) where I did my rheumatology fellowship.

​It is essential that people found to have a positive SSA antibody (but not have evidence of having lupus, Sjögren’s, or any associated disease) be checked regularly by a doctor. I recommend that people in this situation learn what the symptoms of lupus and Sjögren’s are, and if any occur, to see a rheumatologist right away. Also, it is a good idea to see a rheumatologist regularly (such as once or twice a year) to have a proper physical examination and labs done. SLE can be potentially diagnosed by blood work (such as finding low blood counts or protein in the urine), yet the person may feel perfectly fine. The faster a proper diagnosis is made, the better the person usually does. Of course, someone who is SSA antibody positive may never develop any disease with it, but it better to be safe. I’d also recommend that someone in this category (antibody positive but no disease) avoid all potential triggers that may cause lupus (see table 3.1).
Pregnant lupus patient holding baby ultrasound picture
Around 2% of anti-SSA women can have a baby with "neonatal lupus." Make sure to have your obstetrician check a fetal heart check starting at around 16 weeks

Important pregnancy information about anti-SSA


One of the most important potential problems is that this antibody can cross through the placenta and enter the fetus of a woman who is positive for this antibody. These antibodies can potentially cause tissue damage in the unborn baby's heart or skin (called neonatal lupus) whose mother is anti-SSA positive. Fortunately, this occurs in only about one out of fifty mothers who are positive for anti-SSA.

​However, suppose a mother with SSA antibody has one child with neonatal lupus. In that case, her chances of each subsequent baby having neonatal lupus are approximately 20%.


Source of text: from "The Lupus Encyclopedia" preliminary write up for the upcoming 2nd edition, by Don Thomas, MD and Johns Hopkins University Press

References for the above can be found under chapter 4 here: 

https://www.lupusencyclopedia.com/references.html

Photo credit (1st photo of lab test HeP immunofluorescence of anti-SSA test = from www.wikipedia.com article on Anti-SSA/anti-Ro antibodies, photo by Simon Caulton

Author

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

2 Comments

Lupus Nephritis (kidney inflammation)

3/20/2021

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Patient Information in easy-to-understand language

Diagram of kidney in lupus nephritis
40% of SLE patients will develop kidney inflammation (lupus nephritis)
Lupus inflammation of the kidneys (lupus nephritis, LN) video below:
     
     - LN affects 40% of SLE patients
     - People with LN do not feel badly until it becomes severe
     - This is why your rheumatologist asks you to do a urine sample every 3 months (hopefully)
    - This is why you should do a frequent urine sample. The faster it is diagnosed, the faster it is treated, the higher the chances for remission
     - These are unprecedented times for LN. We have the 1st two ever FDA-approved drugs for LN
          Lupkynis (voclosporin, 1/22/21) and Benlysta (belimumab, 12/17/20) 
     - Both of these drugs greatly increase the chances for remission, allowing less usage of steroids
    
​     - WATCH THE VIDEO TO LEARN MORE ABOUT LUPUS NEPHRITIS!
     - Brought to you by Aurinia, Lupus Chick, The Lupus Foundation of New England, and Don Thomas, MD
Picture

Author

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

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How safe are covid-19 vaccines? latest numbers

3/16/2021

3 Comments

 

Results from 64,900 vaccines:    Allergy Risk?

Urticaria hives allergic reaction in systemic lupus erythematosus SLE
Hives (urticaria) photo credit: James Heilman, MD, Wikipedia, "Hives"

​Journal of the American Medical Association Research Study: March 2021

(reference and link to the study are at the bottom of the page)

Easy-to-Read Results Summary:

- Researchers did this study based on the fact that many are nervous to get the vaccines due to having allergies themselves and all the media-hype regarding allergic reactions causes some people to avoid the vaccines.

So... what is the truth?
- Study was done at Massachusetts General Brigham (the Original Harvard hospital!)
​- Studied what happened the 3 days after the first vaccine (the time of highest chances for allergy symptoms)
- 40% got Pfizer, 60% Moderna


Mild allergic reactions
- 1 out of every 50 vaccines caused mild allergic reactions (itch, hives, swelling)
     - Moderna (2.2% of the shots caused mild allergy) vs Pfizer (2% of the shots): not much difference
- 98% of all people had no allergic reactions at all (that is a nice, safe number)


Significant allergic reactions (anaphylaxis)
- Occurred in 1 out of every 3700 Pfizer shots (i.e. .027% of the shots)
- Occurred in 1 out of every 4300 Moderna shots (i.e. .023% of the shots)
- In total, there were 5 anaphylactic reactions per 20,000 vaccines (that is a really safe number compared to many other drugs)

Moderna and Pfizer COVID-19 mRNA vaccines for lupus patients
Pfizer and Moderna were pretty similar in how often they caused allergic reactions: very low numbers

​Timing for significant allergic reaction (anaphylaxis)
- An average of 17 minutes after the shot
- The range was from immediately after the shot up to 2 hours later at the latest


Anaphylaxis severity
- 7 of the 16 patients had mild skin reactions
- 9 of the 16 patients had "measurable" but not life-threatening reactions
- 3 did not seek any medical attention
- 1 went to the ICU and recovered 
- 9 out of 16 patients needed an epinephrine shot (EpiPen) and all recovered
- There were no severe anaphylactic reactions (having shock or requiring intubation)


Who was most likely to get anaphylaxis?
- Out of 16 patients in total, 5 (31%) had a history of anaphylaxis
- 10 out of 16 (61%) had a history of allergies (probably not significantly different than the usual population)


"I have a history of anaphylaxis, what is my risk?"
- Assuming there were 4000 individuals with severe food or drug allergies in this group (this is the expected #)
- Only 5 out of 4000 people with a history of anaphylaxis get an anaphylactic reaction (1 out of every 800)
- Knowing that this is a group of people who are used to planning for anaphylaxis and should have an EpiPen, and who know they have to use it when exposed to a known allergen (like me when I accidentally eat shrimp), that is an incredibly low number.
- I took my EpiPen with me when I got mine. No problems! Only 1 out of every 800 times would someone need to use it


Bottom lines
- Since the results were reported by the employees themselves, and not confirmed by doctors, we cannot ensure that these were truly anaphylactic reactions (people do tend to overestimate such responses = my opinion)
- The researchers, Harvard-famous allergy experts, stated, "... the overall risk of anaphylaxis to an mRNA COVID-19 vaccine remains extremely low"


If you have had an anaphylactic reaction in the past (like I have), I recommend:
- Just take your EpiPen and wait a while after your shot if you have had anaphylaxis before. However, don't sweat it.

You have a higher chance of getting into a car accident on the way to the shot than you do of getting an anaphylactic reaction

Did you get your vaccine? How did you do?
COMMENT BY CLICKING ON "Comments" ABOVE

​​

Author

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

______________________________________________________________

​Reference
: Blumenthal KG, Robinson LB, Camargo CA, et al. Acute Allergic Reactions to mRNA COVID-19 Vaccines. JAMA. Published online March 08, 2021. doi:10.1001/jama.2021.3976
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More Covid-19 deaths in rheumatic diseases: latest study results

3/13/2021

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10.5% of lupus and rheumatic disease patients died

Much higher rate than infected people without rheumatic disease

People with lupus and rheumatic diseases are at risk...
​What is the bottom line? What should you do?

Lupus patient in ICU hospital with COVID-19
Lupus patients and other rheumatic disease patients shown to have higher death rates per a recent large research study
Results of a world-wide study of 3729 rheumatic disease patients and COVID-19

- Earlier reports in early 2020 suggested that lupus patients may not have been at higher risk of COVID-19 complications. This report (referenced below) questions this.
- This report looked at 3729 patient. It included patients with systemic lupus, but it did not specify how many lupus patients nor how they did compared to other patients. However, it looked at the risk for death in patients receiving various drugs, patients with certain comorbidities, disease activity risks, sex, and countries of residence. 


BAD NEWS FOR LUPUS PATIENTS
FIRST THE BAD NEWS
BAD FINDINGS FROM THE STUDY

Rheumatic disease patients at highest risk for death after infected with COVID-19 (listed in order)
(these results will be given in odds ratios.
To figure out how to word this (odds ratio findings):
Subtract 1 from the number, move the decimal point 2 to the right, then say "___ greater odds of dying from COVID-19."
For example, for an 80 year old with a rheumatic disease, they have a 518% greater odds of dying from COVID-19. A man with a rheumatic disease has a 68% greater odds of dying from COVID-19 infection than a woman does.")


     - Age >75 years old, OR 6.18
     - Rituximab (Rituxan) treatment, OR 4.04
     - Sulfasalazine treatment, OR 3.60 (see commentary below)
     - Age 66-75, OR 3.00
     - Immunosuppressant treatments listed below, OR 2.22
                 (tacrolimus, mycophenolate, cyclosporine, cyclophosphamide, azathioprine)
     - Not on a disease modifying agent immunosuppressant, OR 2.11 (compared to patients on methotrexate)
     - Moderate to high disease activity, OR 1.87 (compared to patients in remission and low disease activity)
     - High blood pressure plus heart disease, history of stroke, or hardening of the arteries, OR 1.89
     - Prednisone more than 10 mg daily (or more than 8 mg methylprednisolone), OR 1.69 (compared to no steroids)
     - Chronic lung disease (like COPD, asthma, interstitial lung disease, pulmonary fibrosis), OR 1.68

     - Men, OR 1.46 (compared to women)

United Kingdom had the highest death rate followed by Germany

________________________________________________________________


Commentary about sulfasalazine (SSZ): Do not take away from this that SSZ increases deaths from COVID-19. SSZ is often prescribed by rheumatologists to sicker patients who are at higher risk for infections in the first place. For example, there were more smokers in the SSZ group. SSZ does not suppress the immune system. Also, SSZ is a weak drug (most often used to treat rheumatoid arthritis). Patients on just SSZ are less likely to be in remission or low disease activity (and therefore at higher risk of death from a COVID-19 infection). I suspect that this is an "association" and not a "causality."

​
Doctor giving good news to lupus patients about COVID-19
NOW, THE GOOD NEWS
POSITIVE FINDINGS FROM THE STUDY

     - Hydroxychloroquine (Plaquenil) and belimumab (Benlysta) treatments were not associated with higher death
    - TNF inhibitor, leflunomide, abatacept (Orencia), tocilizumab treatments were not associated with higher death 
     - The United States had the lowest death rate of all countries in the study
          - After the US, countries (in order) of lowest death rates = Germany, then France, then Spain
Strategies to protect against COVID-19 when you have lupus
The Bottom Line: What you should do
BOTTOM LINE AND WHAT YOU SHOULD DO TO PROTECT YOURSELF:

- It is most important to keep your lupus under control. Do NOT stop any medications.
- Abide by all nondrug ways to lower lupus disease activity so you don't need as many steroids.
- Work hard with your doctor to control your disease better so you can lower your steroid dose. 
- Get vaccinated against COVID-19!
- Ask everyone around you to get vaccinated (the cocoon strategy)
- Even after vaccination, abide by all isolation, separation, social distancing strategies


Reference: Strangfeld A, Schäfer M, Gianfrancesco MA, et al. Factors associated with COVID-19-related death in people with rheumatic diseases: results from the COVID-19 Global Rheumatology Alliance physician-reported registry. Annals of the Rheumatic Diseases Published Online First: 27 January 2021. doi: 10.1136/annrheumdis-2020-219498


Author

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

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Join us live to learn about covid-19 vaccines!

3/11/2021

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Sjogren's Foundation is holding a Town Hall 
Get your questions answered!
​Know the latest!

COVID-19 vaccine and Sjogren's and lupus meeting invitation
What is Sjogren's?

Do you have dry mouth or dry eyes?

Around 30% of lupus patients will also have an overlap syndrome with this autoimmune disease that attacks the glands (and other organs) of the body. Learn more here: Sjogrens.org

Get your questions answered about the COVID-19 vaccine and autoimmune disease!

- Email Ben Basloe of the Sjogren's Foundation at bbasloe@sjogrens.org to register for this event
- You must belong to the Sjogren's Foundation. It truly is a wonderful organization (educational events, educational news letters, research up dates, practical advice, working hard on research).  JOIN HERE
- Dr. Cassandra Calabrese is one of the world's experts regarding vaccines and autoimmune disorders. She works at the Cleveland Clinic ... you can ask her questions during the event by placing them in the chat box at the event

Author

Don Thomas, MD

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DHEA and Lupus

3/3/2021

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Use of DHEA in lupus patients
Other facts about DHEA:

- DHEA stands for DeHydroEpiAndrosterone
- It is produced by the adrenal glands
- It is made from cholesterol (yes, cholesterol is a necessary part of our body)
- It is both a steroid and a hormone
- It has both female hormone activity and male hormone activity
- It is used by the body to produce estrogen (female) and testosterone (male)
- It is the most abundant hormone in the human body
- Many lupus patients have lower than normal DHEA levels. This is what started the research to use it for treatment
- The prescription form of DHEA goes by the brand name Prasterone. The FDA would not approve its use for lupus due to the clinical trials not being strong enough to support FDA-approval.

Thanks to Kelli Roseta of More Than Lupus for publishing "Ask Dr. T"

Author

Don Thomas, MD 

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COVID vaccine and rheumatic and lupus drugs

2/25/2021

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This is a list of recommendations on what to do with immunosuppressant drugs and COVID vaccine

Lupus Drugs and COVID-19 vaccine
American College of Rheumatology Clinical Guidance Summary FEB 2021
The above come from the FEB 2021 ACR published guidelines. You can find the entire article here
Bottom Line:
You only need to adjust methotrexate, Xeljanz, Olumiant, Rinvoq, Orencia, cyclophosphamide, and rituximab

Please check with your doctor and ask before implementing these. Your medical condition may dictate otherwise

Resource: American College of Rheumatology ACR COVID-19 Vaccine Clinical Guidance Task Force (2/8/21). COVID-19 Vaccine Clinical Guidance Summary for Patients with Rheumatic and Musculoskeletal Diseases. Retrieved on 2/25/21 from ​https://www.rheumatology.org/Portals/0/Files/COVID-19-Vaccine-Clinical-Guidance-Rheumatic-Diseases-Summary.pdf

Author

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

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Can Systemic lupus go into remission?

2/18/2021

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systemic lupus can go into remission on medication
Systemic Lupus Erythematosus (SLE) can go into remission on medications or treatment
Thanks to Kelli Roseta of "More than Lupus" for sponsoring "Ask Dr. T"

Author

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

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Important advice for rheumatologists

2/14/2021

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Do not automatically stop hydroxychloroquine if your eye doctor tells you your patient has HCQ-retinopathy!

Heed my practical advice below

Normal SD-OCT in a lupus patient
Normal SD-OCT from a 24 year old man
credit: By Wies6014 - Own work, CC BY-SA 4.0, httpscommons.wikimedia.orgwindex.phpcurid=77634880

SD-OCT and VF 10-2 results have false positives. Don't stop your lupus patient's most important medicine without doing the following:

Recommendations:
- If your ophthalmologist advises you to stop HCQ based upon either an SD-OCT or VF 10-2 result, refer that patient to a good retinologist who has a mf-ERG machine
- It is a good idea to have your staff call retinologists around your area and find out if they have this capability or not

Rationale is below:

(note that this statement is made with help from retinologists Dr. Jonathan Lyons and Dr. Reshma Katira in Silver Spring, MD and Alexandria, VA respectively. They specialize in HCQ-retinopathy. This section will appear in the 2nd edition of "The Lupus Encyclopedia," but it is important to make it known widely to help our patients)

Mistakes in the medical literature
We rheumatologists, and eye doctors who do not specialize in antimalarial retinopathy (AMR) need to be careful about the subtleties of making this diagnosis and the potential flaws of the screening tests. The 2014 Browning Clinical Ophthalmology article (so often cited for its sensitivities and specificities), and their reproduction in reports (such as the 2020 Aduriz-Lorenzo article in Lupus) aimed at rheumatologists, need to be mindful of the weaknesses of these methods. HCQ is such an essential therapy for our SLE patients that stopping it due to incorrect diagnoses of HCQ retinopathy should be avoided as much as possible. We have seen this in our own practice where patients have been told they have HCQ retinopathy (based on VF 10-2 or SD-OCT testing), yet have an AMR expert identify an unrelated eye problem (using mfERG testing) as the cause for the test abnormalities. These patients have continued their HCQ with close follow-up by the retinologist, using mfERG technology.

There is a differential diagnosis for SD-OCT and VF 10-2 changes that can look like HCQ damage

It is essential to keep in mind the differential diagnosis for AMR based on these screening tests. Common causes of false-positive tests on SD-OCT and visual field testing include vitreomacular traction, retinal detachment, and age-related macular degeneration in our patients. Some less common causes of abnormalities on these tests include retinitis pigmentosa, infectious retinitis (syphilis, rubella), autoimmune (paraneoplastic) retinopathy, inherited retinal dystrophies (Stargardt disease, Bardet Biedl syndrome, enhanced S-cone syndrome, isolated bulls-eye maculopathy), pigmented paravenous chorioretinal atrophy, and traumatic retinopathy. Visual field testing can have false positives due to dry eye, glaucoma ,and cataracts.
Bull's eye retinopathy due to hydroxychloroquine
Bull's eye retinopathy should be a thing of the past, if we use mfERG, SD-OCT, VF 10-2, and VF 24-2 (in Asians) properly
Photo credit: "The Lupus Encyclopedia" edition 1
The superiority of mfERG for accurately diagnosing HCQ-retinopathy​

The Browning article states that the specificities of VF 10-2 is 92.5%, SD-OCT is 98.1%, while mfERG is 86.9%. These findings are misleading. First, in the Browning research study, HCQ was stopped in patients based upon a clinical judgment for AMR diagnosis. Second, VF 10-2 testing included both red target and white target testing. Red target testing is not as reliable as white target VF 10-2 testing. Also, a 20% error rate was allowed for VF testing, which is too high to be reliable. Third, the mfERG criteria used is not the current standard. Therefore, VF 10-2 and SD-OCT should not be used individually for diagnosis. However, they have excellent sensitivities for screening tests.

            The most recent research shows that mfERG testing has better sensitivity and specificity for AMR than either VF 10-2 or SD-OCT testing. Using mfERG and SD-OCT has 100% sensitivity for identifying ARM, while the currently accepted use of VF 10-2 and SD-OCT has only an 86% sensitivity. A British study recently showed a 95% specificity and sensitivity for mfERG in the diagnosis as a singular test (far superior to VF 10-2 and SD-OCT). Also, mfERG testing is useful for monitoring patients who have other retina problems.
​
            The highest standard of care for this issue is to use SD-OCT and VF 10-2 (white target) testing as screening tests (per the 2016 AAO recommendations). If abnormalities are present that can be seen in AMR, a referral should be given for mfERG testing by a retinologist experienced in AMR. We realize that mfERG testing is not available in all locations, so many patients will not have this luxury. In these cases, referral to a retinologist who does not have mfEFG technology would be the next best step before assuming a diagnosis of AMR. In the future, hopefully, mfERG will be more commonly available to allow even earlier identification of ARM (used as a screening test with SD-OCT) as well as allowing a more accurate diagnosis.

Author

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

References:

Aduriz-Lorenzo PM, Aduriz-Llaneza P, Araiz-Iribarren J, Khamashta MA. Current opinion on hydroxychloroquine-related retinal toxicity screening: where do we stand now? Lupus. 2020;29(7):671-675. doi:10.1177/0961203320919499

K Broderick, MD, Harrison Ngo, BS, Reshma Katira, MD [abstract]. Evaluation of SD-OCT Results in Screening Patients in Early and Later Stages of HCQ Maculopathy. American Academy of Ophth. AAO 2020 Vision Virtual Meeting, NOV 13-15.

Browning, DJ, Lee, C. Relative sensitivity and specificity of 10-2 visual fields, multifocal electroretinography, and spectral domain optical coherence tomography in detecting hydroxychloroquine and chloroquine retinopathy. Clin Ophthalmol 2014; 8: 1389–1399.

Browning DJ, Lee C. Scotoma analysis of 10-2 visual field testing with a red target in screening for hydroxychloroquine retinopathy. Clin Ophthalmol. 2015;9:1499-1509. Published 2015 Aug 20. doi:10.2147/OPTH.S87850

Lyons JS, Severns ML. Detection of early hydroxychloroquine retinal toxicity enhanced by ring ratio analysis of multifocal electroretinography. Am J Ophthalmol. 2007 May;143(5):801-809. doi: 10.1016/j.ajo.2006.12.042. Epub 2007 Mar 6. PMID: 17336914.



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What to do with your immunosuppressant drugs to enhance vaccine responses

2/13/2021

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New guidelines from the American College of Rheumatology for the COVID-19 vaccine

Coronavirus vaccine for COVID-19 and lupus patients
COVID-19 vaccine: Please get yours!
February 2021, the American College of Rheumatology released recommendations on what to do with immunosuppressant drugs around the time of your COVID-19 vaccine. The reason for these recommendations is that some of our medicines can blunt the effects of the vaccine. Timing the drug to the vaccine to your medication can make a big difference.

ALSO: They make other important recommendations as listed below. Make sure to share this with your family, friends, and other patients

NOTE: 
- Do not do any of these without asking your rheumatologist first (let them know that you did read these up to date recommendations here)
- PRINT these out for future reference for other vaccines
- I also recommend these to my patients who get any vaccine, IF they are in remission or at low risk of flaring when they get the vaccine (again, do not do this without talking to your rheumatologist first)
- I agree with all of these, except, I differ with the methotrexate recommendation, as per below

The link to the full recommendations is below at the bottom of the post. 
Summary of vaccine recommendations for lupus patients

Drug recommendations summary:

Abatacept IV (Orencia): Time vaccine administration so that the 1st vaccine occurs 4weeks after Orencia IV (i.e.,        the  entire dosing interval), and postpone the subsequent IV Orencia by 1 week (i.e., a 5-week gap in total); no medication adjustment for the second vaccine dose
Abatacept SQ (Orencia self injectable): Hold SQ abatacept both one week prior to and one week after the first
     COVID-19 vaccine dose (only); no interruption around the second vaccine dose
Azathioprine (Imuran): No modification needed
Belimumab (Benlysta): No modification needed
Cyclophosphamide: No modification needed for pills. For the IV form, time CYC administration so that it will occur approximately 1 week after each vaccine dose, when feasible.
Hydroxychloroquine (Plaquenil): No modification needed
IVIG: No modification needed
JAK inhibitors (Xeljanz, Olumiant, Rinvoq): 
Hold JAKi for 1 week after each vaccine dose
Kineret: No modification needed
Leflunomide (Arava): No modification needed
Methotrexate: 
Hold MTX 1 week after each vaccine dose, for those with well-controlled disease
     NOTE Dr. Thomas' recommendations to his patients: "Hold MTX dose for 2 doses after each vaccine if you are doing well and in remission" (do not do without talking to your own doctor). This is based on the latest study results with the flu shot and methotrexate.
Mycophenolate (CellCept, Myfortic): No modification needed
Prednisone: No modification needed
Rituximab (Rituxan): 
Assuming that patient's COVID-19 risk is low or is able to be mitigated by preventive health measures (e.g., self-isolation), schedule vaccination so that the vaccine series is initiated approximately 4 weeks prior to next scheduled rituximab cycle; after vaccination, delay RTX 2-4 weeks after 2nd vaccine dose, if disease activity allows.
Sulfasalazine: No modification needed
Tacrolimus and cyclosporine A: No modification needed

TNF inhibitors (adalimumab, etanercept, infliximab, golimumab, certolizumab): No modification needed
Tocilizumab (Actemra): No modification needed
Voclosporin (Lupkynis): No modification needed
Stop COVID spread in lupus patients

Other important recommendations from the ACR:

- There is no preference of getting one vaccine over another (Pfizer, Moderna, J&J, AstraZeneca): Get whatever is available for you
- Lab testing is NOT required after vaccines to assess response to the vaccine
- Ask all household members, friends and loved-ones to get vaccinated to protect you (the cocoon effect)
- If you don't believe in the vaccine, get vaccinated at least to protect those you love (Dr. Thomas' addition)
- Get vaccinated even if your disease is active

REFERENCE: ACR, COVID-19 Vaccine Clinical Guidance Summary for Patients with Rheumatic and Musculoskeletal Diseases. Developed by the ACR COVID-19 Vaccine Clinical Guidance Task Force.
This draft summary was approved by the ACR Board of Directors on February 8, 2021.. A full manuscript is pending journal peer review.

Author

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

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Hair Loss and Lupus

2/11/2021

1 Comment

 

How lupus causes hair loss
What you can do about it
Much of the time... it is NOT due to lupus

Learn more from Don Thomas MD and the Lupus Foundation of America

Discoid lupus causing scarring alopecia
Discoid lupus causes permanent hair loss (scarring alopecia) - it is a medical emergency!
Watch the YouTube videos below and learn:

- How lupus causes hair loss
- The different types of hair loss
- The "difference" between alopecia and hair loss
- What you doctor can do to help
- What you can do
- Have a "Plan" for when discoid lupus hair loss flares!
- What is proven to work
- What you should not waste your money on
​- Much of the time... it is NOT lupus... learn how to tell and get the proper help

Click above for part 1 above ... Part 2 below

Author

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

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Hair and skin problems in lupus

2/1/2021

4 Comments

 

Join us FEB 11, 8PM EST, 2021 for a learning seminar online about lupus, hair, skin problems!
​With practical solutions!

CLICK HERE TO REGISTER FOR THE LUPUS HAIR LOSS, SKIN PROBLEM, AND SELF-IMAGE SEMINAR
Lupus Foundation of America Seminar with Dr. Donald Thomas
LFA ZOOM Seminar on hair and skin problems in lupus

CLICK HERE TO REGISTER FOR LUPUS HAIR LOSS SEMINAR

Dr. Donald Thomas will talk about lupus hair loss (alopecia)
Dr. Donald Thomas will talk about the medical aspect of lupus hair loss

CLICK HERE TO REGISTER FOR LUPUS HAIR LOSS SEMINAR

4 Comments

Should lupus patients wait for more research before getting the covid-19 vaccine?

1/23/2021

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COVID-19 vaccine for lupus patients answer by Dr. Don Thomas

Dr. Thomas recommends not waiting to his patients, read below...

Full answer below:

"I'll tell you what I tell my patients, "PLEASE, get your COVID-19 vaccine as soon as it is your turn! However, make sure to ask your doctor first" Why? People are dying left and right. People who did not ever think they would get it - get it. Just this week, I have had 3 patients tell me the horrible, sad story of a loved one or friend who recently died. One was on a ventilator 12 weeks.... 12 weeks! Guess how many similar stories I've heard about the COVID-19 vaccine... none.

The COVID-19 vaccines are the most studied vaccines EVER. No vaccine comes close. Over 70,000 people were in the clinical trials for Pfizer and Moderna. And now... millions have been given out with no bad safety signals. Sure, you will have a very sore arm for a week. Sure, you may have achiness, headache, and low-grade fever for a few days. There is always the chance for an allergic reaction (true for any medicine or vaccine ... I took my EpiPen with me, just in case.) I'll take these mild side effects any day over being in the ICU on a ventilator where I could die alone, only able to see my loved ones on FaceTime.

True, patients with autoimmune diseases were excluded from the clinical trials. True, immunosuppressed patients were as well. However, that goes with all vaccine phase I-III clinical trials. If you want to wait for research on lupus patients. You will wait a very long time.

Caveats ... there is always the possibility you may not have as strong of a response. However, thus far, lupus patients respond very well to other vaccines.

Bottom line: Fear COVID-19 ... don't fear the vaccine.

"Fear COVID-19; Embrace the vaccine!"

Thanks to Kelli Roseta of "More Than Lupus" for publishing "Ask Dr T"
www.lupusencyclopedia.com
*for informational purposes only. 
See Less

Author

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

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Dr. Don Thomas gets COVID-19 vaccine #2

1/22/2021

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1/22/21 is a historical day for me!
​PLEASE... everyone... get yours as soon as you can!

The pandemic is at an all-time high. Just in the past 2 days, 4 of my lupus patients are sick with COVID-19. It is incredibly sad to hear and watch.
Be proactive, educate yourself if you are uncertain about the vaccine (but read reputable sites and not the crazy anti-vaccine sites).

I know I'll make enemies with that comment, but I don't care. Speaking the truth and hopefully getting someone to save their life is more important than trying to appease those who disagree. As Dr. Anthony Fauci said on the news yesterday, speaking the truth is "Liberating" and "Let the science speak!"

And to Aldene, my vaccinator at United Medical Center, Washington DC, in the video ... thank you for saving my life with this God-send!
 
Here is my previous post about the vaccine and lupus patients:

Click here to read about lupus patients and the COVID vaccines

Click here to learn about how the COVID vaccine works

Let this be our motto: 

"Fear COVID, Embrace the vaccine!"

Author

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

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When and who transmits COVID-19 most?

1/16/2021

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New study shows the answers: FREE study to read
Annals of Internal Medicine

Person with lupus spreading COVID-19 by not wearing a mask
Wear a mask to protect others!
Quick Summary of Important Findings of COVID-19 Transmissions:

- Most infected people do not transmit SARS-CoV-2 (the novel coronavirus responsible for COVID-19)

SUPERSPREADERS!

- Some people are "superspreaders," infecting many people they come into contact with
- Who are these superspreaders? How can we identify them so we can super-quarantine them? 
     - We need to figure this out
     - It is theorized they probably have a "high viral load" (heavily infected, with respiratory droplets that are much more infectious than others)

Resource: Meyerowitz EA, et al. Transmission of SARS-CoV-2: A Review of Viral, Host, and Environmental Factors [published online ahead of print, 2020 Sep 17]. Ann Intern Med. 2020;M20-5008. doi:10.7326/M20-5008

lupus patient coughing while wearing a mask
When is someone most infectious?

- Infectiousness occurs before symptoms ever occur
- Infectiousness is at its peak the day before the person develops symptoms
- The infectious period gradually goes away within a week
- There are no cases of transmission more than "about a week" after infection symptoms 1st began

- Definite transmission by "fomites" has not been documented
     - A "fomite" transmission would be touching something the infected person touched
     - Cannot rule out respiratory spread in presumed fomite transmission cases
     - However, fomite-transmission is not ruled out and it is still important to wear gloves and disinfect

- The lowest rate of infection is staying at home, never going out, ordering everything like groceries to be delivered, not allowing anyone to come into contact with you (except another person in the home who does the same)
- If you must come into contact with others, lowest transmission is when both people wear a good mask and are at least 6 feet apart
- Highest transmission rate = indoor social gatherings and not everyone wearing a mask

Read the full article here

Author

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

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Yes! you can be ana negative and have lupus!

1/10/2021

2 Comments

 

Protect yourself from medical mistakes.
Lupus Question of the day ...

Dr. Don Thomas explains ANA negative lupus
Full answer below:

Dr. T says:
"1. I hope you kept personal records at home to give to your new doctor. One of my "Lupus Secrets" is to keep copies of your labs, biopsies, and doctor notes, especially those that first made the diagnosis of systemic lupus. The purpose is exactly for situations like this. I had two patients in the past end up having severe flares of their systemic lupus after their drugs were stopped by a new rheumatologist, due to this exact scenario (one had moved, the other changed insurance plans). Having all the records can make a huge difference and prevent this mistake.

2. Around 20% of SLE patients will have their ANA become negative on successful treatment. These are typically patients who go into remission or "low disease activity." Recent studies also show that they end up having fewer flares than other patients. In the past, we always taught that the ANA never needs repeating once positive the first time in SLE patients because it is not reliable in following disease activity on treatment. However, now, we know that it helps give our patients information about prognosis. If it becomes negative, we can tell our patients, "this is great news! You have a lower likelihood of flaring compared to patients whose ANA stays positive, as long as you keep taking your medications."
​
Disclaimer: This is for medical information only and is not for individual medical advice. 

Thanks to Kelli Roseta of "More than Lupus" for producing "Ask Dr. T"
Picture
Causes of, reasons, and solutions (if needed) when ANA is negative in lupus patients:

- When you have systemic lupus erythematosus (SLE)  that is under good control on treatment (as in this patient)
     PROS = this is great, you are less likely to flare!
     CONS = a new doctor could question the diagnosis. Keep all your old records and labs!

- Laboratory error during the workup of SLE, especially when done by the ELISA or multiarray method
     SOLUTION = ask for your ANA to be done by 2 different methods, especially by immunofluorescence
     or ask for the AVISE Lupus test

- Have SLE plus a different autoantibody, especially anti-SSA antibody and ribosomal-P antibody
​     SOLUTION = check anti-SSA and anti-ribosomal-P if someone has SLE symptoms
     ​     or ask for the AVISE Lupus test

- Someone has very early SLE with fluctuating low level ANA levels
     SOLUTION = repeat ANA test using two different methods, especially by immunofluorescence
     ​     or ask for the AVISE Lupus test

- If have severe hypogammaglobulinemia (immunodeficiency) and have SLE
     SOLUTION = ask your doctor to order the AVISE Lupus test

- Childhood SLE
     Especially younger children have a much higher chance for ANA negativity
     However, they usually become ANA positive as they get older and their lupus worsens

- Cutaneous (skin) lupus 
     Most patients are ANA negative when it is confined to the skin

Author

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

2 Comments

how do antimalarial drugs work for lupus?

1/3/2021

3 Comments

 

Antimalarial drugs can treat autoimmune diseases, such as lupus, Sjogren's, and rheumatoid arthritis...
​
Here's how! (described in easy to understand language)

Malaria organism infecting a red blood cell
Malaria organism attaching to a red blood cell to infect. Photo by NIAID: https://www.flickr.com/photos/54591706@N02/34034143483
“How do medicines used to treat malaria also work for autoimmune diseases like lupus?”

Antimalarial drugs, such as hydroxychloroquine (Plaquenil), chloroquine, and quinacrine, are some of the most common medicines used to treat autoimmune disorders, especially lupus (SLE) and Sjogren's. 

​___________________________________________________________________

To answer this question, you need to understand how the immune system works. One of the key things in the immune system is antigen presentation (figure 30.1A). Antigens are proteins that cause the immune system to make antibodies directed toward those specific antigens for protection. For example, let us say you are infected with parvovirus, which can cause a cold-like illness and sometimes even rash, joint pain, and even a lupus-like illness. The immune system “sees” the proteins (which act as antigens) on this virus, recognizes that they do not belong to the body, and launches an all-out war against the virus. It does this by making antibodies that can attach to the parvovirus antigens, which in turn identifies the virus invaders as the “bad guys.” Subsequently, this alerts other white blood cells of the immune system to attack the virus. The immune system has now learned that parvovirus is a “bad guy.” It is now able to produce these antibodies that recognize parvovirus for the rest of your life. Suppose you are infected by parvovirus ever again. Your immune system’s white blood cells can attack the virus so that you do not get sick from it ever again.
Picture
Hydroxychloroquine changes the acidity inside the portions of immune cells that recycle antigen proteins

So now, let us go a little deeper into how the body makes these antibodies in the first place, focusing on a concept called antigen processing (figure 30.1A). This is a very technical discussion that can be skipped by many people reading this book. However, it can be interesting for the person who wants to know more about how anti-malarial medicines work. Macrophages are white blood cells that are responsible for identifying foreign antigens for the immune system. You can think of them as the frontline soldiers that come into contact first with any unusual antigen proteins such as viruses and bacteria invading the body.

Macrophages are often also called “antigen-presenting cells” in immunology. In lupus, where the immune system starts to attack parts of the body itself, the antigens it thinks are foreign are actually antigen proteins naturally occurring in the body. When the macrophages see these antigens (such as proteins from skin cells), they engulf them into little bubbles called vacuoles (follow along in figure 30.1A). The vacuoles break down (or digest) these antigen proteins into numerous smaller components and reassemble them into structures that are then attached to the outside of the macrophage cell surface. The macrophages then show these antigens (antigen presentation) to other white blood cells of the immune system (especially T-cells) so that they can recognize them as being “bad” proteins. This causes other white blood cells (called B-cells) to start making antibodies directed against these antigen proteins. However, in lupus, these antigen proteins that end up being attacked belong to the person’s own body. The antibodies produced to attack the body’s own antigens are called “auto-antibodies.” 

A well-known example in systemic lupus erythematosus (SLE) is when ultraviolet (UV) light can damage skin cells. These can then release their inner contents, such as the nucleus and its own DNA, into the surrounding tissues and bloodstream.  The lupus immune system can then make anti-DNA autoantibodies that attach to the person’s own DNA from the skin cells (thinking that the DNA is a foreign attacker). This combination of the DNA protein antigen bound to the anti-DNA antibody is called an “immune complex.” These immune complexes can then travel throughout the body, depositing in other tissues where the lupus immune system can cause inflammation and damage. An important example of this is the kidneys. These immune complexes can contribute to kidney inflammation (lupus nephritis). This illustrates how UV light exposure can cause a lupus rash in the area of exposure and in distant parts of the body, like the kidneys. 

For this antigen presentation to occur, the macrophages’ vacuoles must have a low pH level (in other words, they must be acidic). Otherwise, the enzymes of the vacuoles that are responsible for processing the antigens will not work. The anti-malarial medicines (such as hydroxychloroquine, Plaquenil) enter the macrophages and subsequently concentrate inside these vacuoles. The anti-malarials have a higher pH level and cause the vacuoles to develop a higher pH level (figure 30.1B). The vacuole enzymes only work under precise pH conditions. This higher pH level in the vacuoles prevents the macrophages’ digesting enzymes from breaking down the antigens to present the T-cells. Therefore, the T-cells cannot “see” these antigens and do not signal the B-cells to make the lupus autoantibodies. Therefore, the anti-malarial medicine calms down the immune system of the person who has lupus. Interestingly, though, it does not actually cause overt immunosuppression. In other words, the immune system can still function normally in different areas and still protects the person from infections and cancer.
__________________________________________________________________

Why hydroxychloroquine is not a cure for autoimmune diseases-

After reading the above, one may think it sounds like a cure! It stops autoantibody formation; therefore, it should control lupus completely!

We wish it were that easy. This is just one little tiny part of the immune system. There are many other sections of the immune system that are functioning abnormally in SLE. Also, hydroxychloroquine doesn't completely stop antigen processing and antibody formation. It is a weak medication. Think of it as "calming down" the process, not eliminating it entirely. And, thank goodness it doesn't! We need antigen processing to keep working so that our immune system still fights off infections, cancers, etc. The immune system continues to function well with antimalarial drugs. In fact, SLE patients who take hydroxychloroquine are less apt to get infections and cancers compared to patients who do not take it.

Also, this is not the only way that antimalarials work on the immune system. They also work in other ways. For example, we think that inhibiting part of the immune system called toll-like receptors probably plays a more critical role in how antimalarials help in treating lupus. However, delving deeper is beyond the scope of this post.

That would have to be the subject of a different (long) post. The purpose of this article was to just give one part of the story on why a medicine used to treat an infection would work for an autoimmune disease. The immune system is indeed fascinating!
electron microscope of malarial food vacuole (fv) inside the malaria parasite
electron microscope of malarial food vacuole (fv) inside the malaria parasite. This is where Plaquenil changes the pH (credit cited below)

​How hydroxychloroquine kills malaria-

A similar thing occurs in malaria. Malaria is an infection due to single-celled parasites called Plasmodium that get into humans from mosquito bites. The malaria organisms get into the red blood cells, where they ingest iron-rich hemoglobin. The malaria parasite needs to digest this hemoglobin inside vacuoles within their own bodies (similar to the macrophages of the immune system ingesting antigen proteins inside their vacuoles). The malaria organisms digest the proteins of the hemoglobin to use for food and reproduce. Just as our macrophage vacuoles need an acidic environment to digest antigen proteins, the malaria organisms also require an acidic environment to digest the hemoglobin and dispose of the waste product (the iron-rich heme portion of the hemoglobin). The anti-malarial medicine dissolves into the vacuoles of the malaria organisms and raises their pH levels. The malaria organisms are unable to digest the hemoglobin and to get rid of the heme. The heme molecules combine with the anti-malarial medicine molecules and build up inside the malaria organisms, trapped within their vacuoles. This is toxic to the malaria organisms, and they stop reproducing and hopefully die.

The bottom line is that anti-malarials appear to work by increasing the vacuoles’ pH inside malaria organisms and macrophages. These vacuoles usually ingest hemoglobin (in the case of malaria organisms) or antigen proteins (in the case of macrophages in people with lupus). When the pH is increased, these vacuoles are unable to process these components. In the case of malaria, the malaria organisms die due to the buildup of toxic waste products. In the case of lupus, the macrophages cannot process antigens properly to present them to T-cells. Therefore the immune system is calmed down so that it does not attack the body (such as the skin, joints, or kidneys) as much.
Anti-malarial drugs have other effects on the immune system. However, we will only discuss the above effect as it is simple to illustrate. 

Feel free to comment above.
Please get 2 yearly eye exams (SD-OCT and a VF 10-2) if you take Plaquenil or chloroquine.
Get 3 tests if you are Asian (add on a VF 24-2 or a VF 30-2)


The above excerpt and figure comes from "The Lupus Encyclopedia" by Johns Hopkins University Press. The language has been altered for better readability. ​

Source of electron microscope malaria parasite food vacuole: Jani D, et al. HDP-a novel heme detoxification protein from the malaria parasite. PLoS Pathog. 2008 Apr 25;4(4):e1000053. doi: 10.1371/journal.ppat.1000053. PMID: 18437218; PMCID: PMC2291572.

Author

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

Other references:

Torigoe M, Sakata K, Ishii A, Iwata S, Nakayamada S, Tanaka Y. Hydroxychloroquine efficiently suppresses inflammatory responses of human class-switched memory B cells via Toll-like receptor 9 inhibition. Clin Immunol. 2018 Oct;195:1-7. doi: 10.1016/j.clim.2018.07.003. Epub 2018 Jul 4. PMID: 29981383.

Wang F, Muller S. Manipulating autophagic processes in autoimmune diseases: a special focus on modulating chaperone-mediated autophagy, an emerging therapeutic target. Front Immunol. 2015;6:252. Published 2015 May 19. doi:10.3389/fimmu.2015.00252​

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Benlysta: 1st drug approved for lupus nephritis

1/2/2021

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Lupus Question of The Day: Is Benlysta for mild nephritis?

Benlysta is FDA approved to treat lupus nephritis
Ask Dr. T question and shortened answer about Benlysta in lupus nephritis
Question of the Day:
"I have lupus nephritis and just heard that Benlysta has been approved to treat it. I have stage 3 disease. Is this medication more for people with mild nephritis?"

Dr. T's Answer:
"It all depends upon what your definition is of "mild nephritis." I would consider ISN/RPS classes 1 (minimal mesangial) and 2 (mesangial proliferative) as mild. They do not need treatment at all (except for Plaquenil/hydroxychloroquine plus often an ARB or ACEi medicine to lower protein in the urine). Podocytopathy could also be considered a "mild" type of lupus nephritis. Usually goes into remission quickly with Plaquenil plus steroids, with a rapid steroid taper. Therefore, for my definitions of "mild" lupus nephritis, Benlysta is not needed.

The Benlysta lupus nephritis clinical trial (called BLISS-LN) showed that when Benlysta was added on top of standard of care (Plaquenil, steroids and either mycophenolate or cyclophosphamide) there were significantly more people who improved on Benlysta plus standard of care compared to those who were treated with standard of care alone. More patients had partial or complete responses (including remissions) compared to standard of care (i.e. how we treat lupus nephritis before Benlysta). Plus... there were no significant differences in side effects, which is amazing. Also, more patients who got placebo plus standard of care died or went into complete kidney failure compared to the Benlysta group.

This is all great news. The lupus community is excited about this landmark event: Benlysta being the first FDA-approved drug for lupus nephritis ever. "

Thanks to Kelli of "More than Lupus" for producing the "Ask Dr. T" series!

Author

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

Note that this post is for informational purposes only, and is not meant to be specific medical advice. Always seek the advice of your healthcare provider with any questions regarding your own medical situation.

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How the covid-19 vaccine works: amazing!

12/29/2020

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I got mine, #1, today on 12/29/20! Please get yours.

Dr. Donald Thomas gets the COVID-19 vaccine
Dr. Don Thomas, MD getting his COVID-19 vaccine
First: If you have an autoimmune disorder, please consider getting the vaccine when it is your turn

Read my previous post on why lupus patients should get the COVID-19 vaccination

I got my Moderna COVID-19 vaccine on 12/29/20. I'll post how I do day by day below at the bottom of this post. However, 1st, I'll go over how this interesting vaccine works!
mRNA that produces the spikes of the COVID-19 coronavirus

How the COVID-19 vaccine works "in a nutshell"

​This is fascinating!

- The 2 COVID-19 vaccines available now (Pfizer and Moderna) are RNA vaccines

- It helps to know how RNA works (specifically mRNA)
- Look at the cell above
- We are all born with DNA that codes everything our cells produce. It is responsible for our having blue eyes instead of brown, or black hair instead of blond, or, yes... having funny smelling pee after eating asparagus (or not)
- Our DNA is "transcribed" (think it is as being translated) into RNA, and eventually messenger RNA (mRNA)
- Then, a part of our cells called ribosomes can read this mRNA like a food recipe and produce a particular protein (such as the one responsible for your 2nd toe being shorter, instead of longer, than your big toe)
mRNA of COVID-19
COVID-19 vaccine contains the COVID-19 mRNA that codes for those spikes
- The COVID-19 vaccines are NOT live virus vaccines. They CANNOT give you COVID-19 (impossible)
- Ingeniously, they contain the virus' mRNA that codes for those spikes you see on the outside in all the pics
     - These spikes look somewhat like a crown. Latin for "crown" is corona, hence, coronavirus
Picture
mRNA injected into our bodies as a vaccine: tricks our bodies into producing the spikes, but not the entire virus
- Fascinating!
- The mRNA of the virus (in the vaccine) is injected into your muscle
- It spreads quickly throughout your blood stream and body 
- The mRNA is absorbed into our own cells
- Our own cells mistakenly think this mRNA came from our own DNA and instructs those cells to produce this protein
- The protein is the same one found in the spikes of the SARS-CoV-2 coronavirus responsible for COVID-19
     - In other words, our cells produce just those pink spikes you see in the pic below, not the entire virus
- The viral spike protein ends up on the surfaces of our cells
- Our very smart T-cells of the immune system actually DO recognize these as being foreign
- They say, "we need to fight this off and protect us"
- They summon other players of the immune system as well to the battle
Picture


DaOur B-cells then learn to produce antibodies that quickly recognize those COVID-19 spikes

- The booster shot you get a few weeks later strengthens this memory
- If you were to actually get infected with COVID-19 in the future, your B-cells would recognize those tell-tale spikes
- Those smart B-cells would say, "This is a foreign invader we must destroy"
- They summon the rest of the immune system to attack the virus and protect us

- Note that many people will get a very sore arm, redness, swelling, aches, pains, fever for a few days after the vaccine
- This is actually the immune system learning to mount an attack. Think of it as a sign of the vaccine working
​_________________________________________________________________________
WHAT HAPPENED AFTER MY SHOT
Day #1:
It has just been a few hours since my vaccine
I took some Tylenol and Advil to decrease my chances for the above side effects
If you get the vaccine (which I hope you do), ask your doctor before you consider taking Tylenol and/or Advil or Aleve

Day #2: Woke up with a sore upper arm muscle (deltoid) in the area of the shot. However, I expected this as usual with a good, strong vaccine.  I'll just take Tylenol plus Advil around the clock today to lower the risk of pain and to lower my risk of a flu-like syndrome reaction. 

Day #3: Mild, tolerable arm soreness. I feel great! I am optimistic about getting vaccinated and feeling safer.

Author

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

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angela of 90-Day Fiance: The Lupus Encyclopedia

12/26/2020

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​A gift for Christmas 2020, since I'm a 90-Day Fiancé fan. Angela wishes me a Merry Christmas and mentions my book. She looks great since her weight loss surgery and she must still be with Michael of Nigeria since she mentions him as well. Merry Christmas to you, Angela!
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Tips: Dealing with autoimmune disease fatigue

12/25/2020

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The causes of fatigue
​
Tips on how to improve energy with Sjogren's, lupus, and related disorders

Woman with Sjogren's and lupus and lupus fatigue
Fatigue is common in lupus
This video discusses the causes and gives practical tips on how to improve fatigue

Thank you to the Sjogren's Foundation for producing this video as a part of their "Town Hall" series during the COVID-19 pandemic of 2020.

Although this was directed towards people who have the autoimmune disorders, Sjogren's, it also pertains to other  autoimmune disorders, such as lupus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis.
Go to the Sjogren's Foundation's Town Hall series for more informative videos

If you have Sjogren's, become a member of the Foundation. You get so much out of being a member to include an educational magazine every few months with great articles on how to deal with the complications of Sjogren's, such as fatigue, pain, memory problems, sleep problems, the dryness, etc. They also share with their members the latest in research.



Picture
How do you deal with your fatigue? Do you have your own tips and advice? Please share by clicking on COMMENT above.
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Author

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

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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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