Read on. What was it like to get vaccinated? ... and some advice for lupus patients
A rheumatology researcher becomes a research study participant for the Pfizer COVID-19 vaccine
Dr. Kathryn Dao, a rheumatologist in Dallas, Texas, wrote about what it was like getting vaccinated for COVID-19 as a research study participant. I will include the link to her fascinating story below but will provide a short outline on some important points.
- It was Pfizer's placebo-controlled trial. How could she possible know she got the vaccine and not the placebo?
~ It is because she developed classic vaccine reaction symptoms after getting it
~ Out of interest, the name of the trial was:
the phase 3 trial of the Pfizer/BioNTech mRNA vaccine against SARS-CoV2 (protocol C4591001)
- How big was the research study and how long is it?
~ The goal was to get 44,193 subjects
~ Subjects are expected to be followed for around 2 years each
About the COVID-19 vaccine
- How was the vaccine given?
~ 1st dose followed by a 2nd dose 21 days later
~ What is in the vaccine?
~ It contains RNA (ribonucleic acid) from the coronavirus that causes COVID-19
~ After the injection, our immune system should see this foreign RNA and learn how to make antibodies against it for future protection
~ Then, if this person is exposed to the coronavirus, their immune system will recognize the COVID-19 RNA and can launch an attack against it and hopefully prevent infection
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.
- 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.
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:
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.
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?
Lupus Secrets: List sulfa antibiotics in your allergy list if you have lupus
Lupus patients are more likely to have allergies to antibiotics
Many systemic lupus erythematosus (SLE) patients report numerous drug allergies. However, studies do not show an increased amount of allergies than non-lupus patients (other than antibiotics). SLE patients have higher rates of allergies and intolerances to penicillins, cephalosporins, sulfonamides, and the antibiotic erythromycin. The most important antibiotic intolerance is that of sulfonamide (often called “sulfa”) antibiotics. This most commonly refers to the antibiotic trimethoprim-sulfamethoxazole (Bactrim and Septra).
Sulfur versus sulfonamides versus other sulfa drugs and lupus
The element called sulfur exists in all of us, so none of us are allergic to sulfur. Many different molecules contain sulfur to include sulfates, sulfites, and sulfonamides. Lupus patients have an increased risk of antibiotic sulfonamides (specifically Bactrim, trimethoprim-sulfamethoxazole) flaring their lupus. Sulfonamide antibiotics are very different than sulfates, sulfites, and others. These are safe for lupus patients to take. There are some non-antibiotic sulfonamides (furosemide, hydrochlorothiazide, acetazolamide, sulfonylureas used for diabetes, and celecoxib). However, these do not appear to increase lupus flares and are safe for lupus patients to take (unless they just happen to have an allergy to that particular drug).
Sulfa antibiotics can cause significant lupus flares (list is as an allergy!)
Around one-third of lupus (SLE) patients have reactions to Bactrim, and it can cause lupus flares as well. These reactions are more common in Caucasians, those with low lymphocyte counts (lymphopenia), and anti-SSA positive patients. Still, they can occur in any lupus patient. They especially can cause flares of fever, sun-sensitive rashes, and low blood cell counts. Sometimes these flares can be severe. There are so many other antibiotics now available that sulfonamide antibiotics can usually be avoided in SLE patients.
I, and most lupus experts, recommend that all lupus patients always carry an up-to-date medication list (similar to the first image, above) and that it also includes an allergy list that includes “sulfa antibiotics.” This can protect you if you ever get sick and end up in the emergency room where it can be hard to remember to tell your entire medical history. While lupus patients are more likely to be intolerant of the antibiotics penicillin, cephalosporins, and erythromycin, these do not typically cause lupus flares, and the vast majority of SLE patients tolerate them well. Therefore, they do not need to be avoided in lupus patients who are not allergic to them.
Learn and abide by the Lupus Secrets to live a healthier, longer life with SLE
This is my first blog post (as I stated I'd do in my 1st post) with one of my Lupus Secrets. It is such an important one! I will discuss the other "Secrets" in my blog in the future.
PLEASE SHARE THIS POST WITH OTHER LUPUS PATIENTS ... HELP GET THE WORD OUT!
Background of "The Lupus Secrets":
A long time ago, I realized that most patients and most physicians were not familiar with all the important things that lupus patients can do themselves that improve their health and lives. So, I made a list and called them “The Lupus Secrets" that addresses these important things. I called them "The Lupus Secrets" not because I wanted them to be a secret, but because they appeared to be a secret since most people (and doctors) did not know about all of them.
I regularly update this list as our knowledge of lupus improves. I give this list to all my patients, and encourage them to follow it. Most of my SLE patients are in remission or low disease activity, and I care for over 200 people who have SLE. I attribute my patients’ utilization of “The Lupus Secrets” as an important tool in achieving this goal. Please download a copy. Each recommendation has medical literature to back it up (check out the references below for this "Secret"), though each varies in the strength of evidence.
Don Thomas, MD
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
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.
The interactions of hepatitis C and systemic lupus is strange, and hepatitis C can mimic lupus ... read on!
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
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:
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
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
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
The Flu Shot is a Life-Saver for Lupus Patients
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
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.
DONALD THOMAS, MD