THE LUPUS ENCYCLOPEDIA
  • Blog
  • About the Book
    • The Lupus Encyclopedia
    • about me
    • References
    • Book Photos
  • Lupus Secrets
  • Patient Education
  • Contact

Lupus Encyclopedia

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
2 Comments

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
3 Comments

More Covid-19 deaths in rheumatic diseases: latest study results

3/13/2021

0 Comments

 

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" 

0 Comments

COVID vaccine and rheumatic and lupus drugs

2/25/2021

0 Comments

 

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" 

0 Comments

What to do with your immunosuppressant drugs to enhance vaccine responses

2/13/2021

0 Comments

 

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"

0 Comments

When and who transmits COVID-19 most?

1/16/2021

0 Comments

 

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"

0 Comments

How the covid-19 vaccine works: amazing!

12/29/2020

10 Comments

 

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"

10 Comments

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

12/3/2020

5 Comments

 

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

Lupus patient with COVID coronavirus
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


COVID-19 RNA
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?
Zoom meeting during COVID-19

Author

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

5 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.
 lupus secrets by Donald Thomas, MD
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!
 lupus information
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


Picture showing a bunch of people holding a sign in the shape of a cloud that says comment on lupus medication list and lupus sulfa allergy
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.

12 Comments

All adult lupus patients need to be tested for hepatitis c

9/12/2020

0 Comments

 
The interactions of hepatitis C and systemic lupus is strange, and hepatitis C can mimic lupus ... read on!
Drawing of an electron microscopic view of the hepatitis C virus
Hepatitis C is a virus that can attack the liver (called hepatitis) as well as numerous other organs of the body. Untreated hepatitis C infection can cause jaundice, cirrhosis, and liver cancer. However, the anti-viral drugs used to treat hepatitis C are miracle drugs, resulting in over 95% of infected individuals being cured with them.

The hepatitis C virus is most commonly transmitted through exposure to infected blood, most commonly by IV drug use, blood transfusions, and needles sticks. However, sexual contact, mother to fetus transmission, tattooing, and body piercing can also result in infections. The CDC recommends that all adults be tested for hepatitis C. In those with increased risk for infection (such as IV drug users), regular testing should be done. 

Drugs used to treat hepatitis C include: 
Glecaprevir, Grazoprevir, Paritaprevir, Simeprevir, Voxilaprevir, Daclatasvir, Elbasvir, Ledipasvir, Ombitasvir, Pibrentasvir, Velpatasvir, Sofosbuvir, and Dasabuvir. 

Hepatitis C can also cause the immune system to become overactive. Hepatitis C infection can look exactly like systemic lupus erythematosus (SLE). Hepatitis C infection can produce many of the same antibodies seen in SLE and cause many of the same problems, such as arthritis, rashes, vasculitis, kidney disease, and nerve problems. This is why rheumatologists usually test everyone that may have SLE for hepatitis C. Treating and curing the person of hepatitis C results in the lupus-like disease disappearing.

Since hepatitis C causes the immune system to become more active, if someone with SLE gets infected, their SLE can potentially become more active. Also, SLE patients have a higher chance of being infected with hepatitis C than the general population. This probably occurs due to their immune system, not being able to protect the person as well as it should. For unknown reasons, hepatitis B infections do not occur more commonly in SLE patients. All SLE adults should get tested for hepatitis C and undergo treatment if positive for an active infection. 

- Don Thomas, MD

​Reference: Mahroum N, Hejly A, Tiosano S, et al. Chronic hepatitis C viral infection among SLE patients: the significance of coexistence. Immunol Res. 2017;65(2):477-481. doi:10.1007/s12026-016-8886-7

Photo credit = Wikipedia and ​Blausen Medical Communications, Inc
0 Comments

Hepatitis b vaccine:                                                      Many people with lupus Need it!

9/11/2020

0 Comments

 
That is right!
Many of you reading this post should get the hepatitis B vaccine

Less commonly known reasons for getting a Hep B vaccine include:

- Diabetics aged 19 through 59 who have not been vaccinated!
- Anyone with fatty liver disease
- An ALT or AST (liver blood tests) greater than twice the upper limits

Read the below link to learn why these groups should get a hepatitis B vaccine per the CDC

Here is the CDC's rationale for these groups getting vaccinated as well as a list of other at risk individuals who should get vaccinated: 
​
https://www.cdc.gov/hepatitis/hbv/bfaq.htm​

Many of you reading this should get it based upon this and you (and possibly even your doctor) did not know.

Get your hepatitis B vaccine

- Don Thomas, MD

Photo shows a man with jaundice (note the yellow eyes) due to hepatitis. (photo credit = CDC)
​Mahroum N, Hejly A, Tiosano S, et al. Chronic hepatitis C viral infection among SLE patients: the significance of coexistence. Immunol Res. 2017;65(2):477-481. doi:10.1007/s12026-016-8886-7
Man with yellow eyes due to jaundice from hepatitis

0 Comments

Lupus question of the day:

9/10/2020

8 Comments

 

Do Flu Shots Cause Lupus Flares?

Question of the day: Dr. Thomas, I have lupus and was told by another lupus patient that she gets a flare when she gets a flu shot. Do flu shots cause lupus flares?  - JP
Black middle aged black doctor giving a heavy set white woman with lupus a flu shot
ANSWER: "No and Yes; in that order"

Fortunately, the vast majority of systemic lupus erythematosus (SLE) patients do not get a flare after getting the flu shot. A recent study showed that only 32 SLE patients out of 1966 (1.6%) who got the flu shot (influenza vaccine) had flares from their SLE, and all were mild. I have never had a patient get a severe flare from the flu shot over 30 years. I had one severe flare from Pneumovax, though.

Now the really interesting thing about this study is as follows... it would be very easy to conclude "the flu shot must cause flares in 1.6% of SLE patients." However, that is not true. Imagine studying 1966 SLE patients even for just a very short period of time. I find it amazing that only 32 out of 1966 would flare. You'd expect more of them to flare during the study period simply because that is what lupus likes to do.

Compared to healthy controls, they responded very well to the vaccine as far as it protecting them from the flu.

It is flu season. Please get your flu shot. Especially with COVID-19, we do not want a one-two punch!

NOTE: The Centers for Disease Control recommends getting the flu shot BEFORE the end of October.

(Many people misinterpret this as they should get it in October). Their only warning about this is that elderly vaccine recipients may have the vaccine response be a little weaker at the end of the flu season if they get it in July or August. Otherwise, it is best to get it as soon as it is available to help decrease community spread.

Please SHARE my post with others.

Click the COMMENTS button above regarding your experience with the flu shot when you have lupus. Would love to hear from people who have had no problems at all and those who have. 

- by Don Thomas, MD, FACP, FACR

8 Comments

Please get your flu shot!

9/7/2020

0 Comments

 

The Flu Shot is a Life-Saver for Lupus Patients

White woman doctor giving female lupus patient a flu shot
It's that time of year again. Time to get your flu shot! I already got mine, have you gotten yours.  Here are some important facts about the flu shot, infections, and systemic lupus erythematosus (SLE):

- Infections are the 3rd most common cause of death in SLE and most are preventable with measures such as vaccines. Learn of the importance of preventing infections in Dr. Thomas' Lupus Secrets
- The 2018 - 2019 flu season caused close to 60,000 flu-related hospitalizations in the United States. 
- Fortunately, with the public practicing social distancing, hand-washing, mask-wearing, etc. due to COVID-19, hopefully we'll see less influenza. However, we still need everyone to get the flu shot. Getting COVID-19 plus influenza would be deadly.
- The flu shot reduces the risk of getting the flu by 50%, but if you get it, you are more likely to have a less severe infection as per the below ...
- People who get the flu shot are 82% less likely to end up in the intensive care unit. SLE patients are 60% less likely to die compared to people with SLE who do not get vaccinated. 
- The flu shot has never given anyone the flu = Fact! 
- The flu shot does not cause autism. 
- You should still get the flu shot, even if you have an egg allergy.
- You can get the flu shot on any of your lupus medications. However, prednisone greater than 40 mg a day will decrease your response to the vaccine. If you are on Rituxan, try to get it 4 weeks before your Rituxan dose. 
- If you do not believe in getting the flu shot (shame on you), at least get it to protect the ones you love. This is one of the main reasons why we health care professionals get it. We want to lower the chances of spreading it to our patients. 

Please get your flu shot. The life you save may be your own.

- Don Thomas, MD
lupus patient with an "I got my flu shot" sticker on her arm
0 Comments
    Note that Dr. Thomas' posts are for informational purposes only, and are not meant to be specific medical advice for individuals. Always seek the advice of your healthcare provider with any questions regarding your own medical situation.

    Author

    DONALD THOMAS, MD

    Archives

    April 2021
    March 2021
    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020

    Categories

    All
    Cardiovascular Disease
    Complementary Alternative Medicine
    COVID 19 And Lupus
    COVID-19 And Lupus
    Diagnosing Lupus
    Diet And Lupus
    Flares In Lupus
    Hair
    Infections And Lupus
    Kidneys & Bladder
    Labs Used In Lupus
    Lupus Poems/songs/movies
    Lupus Secrets
    Miscellaneous
    Nails And Lupus
    Preventative Medicine
    Remission And Other Disease Activities
    Research Studies
    Skin
    Treatment: Drugs
    Triggers Of Lupus Disease Activity

    RSS Feed

THE LUPUS ENCYCLOPEDIA
REFERENCES
LUPUS SECRET
DR. DONALD THOMAS
PATIENT EDUCATION
BLOG
CONTACT

lupus Encyclopedia
BUY ON AMAZON

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.

FOLLOW US ON SOCIAL MEDIA

    RECEIVE NEWS, BLOG ARTICLES AND UPDATES

SUBSCRIBE NOW
TheLupusEncyclopedia©2020AllRights Reserved
  • Blog
  • About the Book
    • The Lupus Encyclopedia
    • about me
    • References
    • Book Photos
  • Lupus Secrets
  • Patient Education
  • Contact