What Difference Would a Diagnosis of Lupus Make?

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I have written about the challenge of diagnosing lupus in a previous blog. In that post, I described the simplistic checklist that exists for diagnosing this often inscrutable, and potentially life threatening autoimmune disease. Recently, a friend consulted her GP because the possibility of a lupus diagnosis had been suggested in the past. The rheumatological symptoms that suggested this diagnosis had persisted, and had even become more severe.

Arthritis of the Right Hand
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Image credit: CDC/Dr. Sellers, Grady Hospital. Used under CC 1.0 Universal public domain license. One of the most common symptoms of lupus is inflammatory arthritis. Although, a patient may have lupus, and also have another type of arthritis.

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The GP's response to my friend's query was: what difference would it make if you were diagnosed with lupus? In this blog I will try to explain (to the GP and others) why an accurate diagnosis of lupus is critically important. As a matter of fact, clarity of diagnosis is essential for the delivery of appropriate medical care in any situaiton. This clarity will not only offer the patient efficient and effective treatment for a malady, but almost as importantly, will help to avoid costly and even dangerous inappropriate treatment.

Photosensitivity
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Image credit: Walt Fletcher. Used under a CC 4.0 license. Developing a rash after exposure to the sun may be quite common, but it is also one of the symptoms experienced by lupus patients. It is estimated that 2/3 of these patients have a sensitivity to UV light, either from a natural or artificial source. In many cases, exposure to UV may cause an exacerbation of systemic disease.

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Differential Diagnosis:
It seems logical and proper for doctors to consider likely diagnostic answers to a clinical puzzle, over unlikely possibilities. As a matter of fact, medical schools train doctors to look for the usual and not the unusual. In medical practice, the way this simple rule of thumb is generally stated: If you hear hoof beats, think horses not zebras.

Deductively arriving at a diagnosis is called a differential diagnosis. In arriving at a differential diagnosis, doctors consider observed/reported symptoms, along with diagnostic tests. With this information they distinguish one disorder from others. A differential diagnosis is essentially an educated guess, based on data.

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Example of a Differential Diagnosis Chart (Epilepsy)
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Image credit: Anzellotti F, Dono F, Evangelista G, Di Pietro M, Carrarini C, Russo M, Ferrante C, Sensi SL and Onofrj M (2020) Psychogenic Non-epileptic Seizures and Pseudo-Refractory Epilepsy, a Management Challenge. Front. Neurol. 11:461. doi: 10.3389/fneur.2020.00461. Used under CC 4.0 license.

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If someone does have lupus, and the doctor doesn't know it, the possibility that a zebra (lupus) may be the cause of illness will be disregarded. In such a case, necessary, perhaps essential, treatment will not be administered. When it comes to lupus, the deferral of treatment can be disastrous. If lupus inflammation is central to a problem, or is contributing to a problem, that issue should be treated aggressively.

Lessons From COVID-19 About Catastrophic Inflammation
Most of us have read that long-term effects from COVID-19 may arise from inflammation, rather than from direct action by the virus. A 2021 study published in Science Daily, for example, describes brain damage suffered by COVID-19 patients. Though there is no evidence of virus in the brain, brain damage has occurred. The authors of the article suggest, "neurological changes often seen in these patients may result from inflammation triggered by the virus in other parts of the body or in the brain's blood vessels".

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I have read other descriptions of diffuse inflammation from COVID-19. As I read theses descriptions, I thought of the similarity to lupus inflammation. In lupus, a pathogen does not attack organs. Inflammation is the antagonist. An unchecked lupus flare can be, and often is, fatal. As a matter of fact, before the era of effective medication and diagnosis, lupus was considered a progressive, fatal disease. The chances of being alive 5 years after diagnosis was less than 50%.

Synthesizer Used by Musician/Producer J. Dilla, Lupus/TTP Victim

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Image credit: Renee Fields. Picture taken at the National Museum of African American History and Culture. Used under CC 3.0 license J. Dilla was a hip hop rapper/producer who died in 2006 after a battle with a rare blood clotting disorder, TTP (thrombocytopenia), a manifestation of lupus.(TTP also occurs in people who don't have lupus)

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Thrombocytopenia, Lupus, COVID-19, and Adenoviral COVID-19 Vaccines
The TTP that killed J. Dilla was an inflammatory blood clotting disorder, a rare manifestation of lupus. TTP is also an inflammatory condition associated with COVID-19. An even more interesting fact: TTP, or TTP-like syndrome, is associated with the J&J and Astro-Zeneca vaccines.

There are cases where latent, lupus-associated TTP (such as J. Dilla had) was activated by a COVID-19 infection. In one case, reported by doctors at Keio University School of Medicine, Tokyo, familiarity with the patient's history helped doctors come up quickly with appropriate care. Doctors were able to treat both the COVID-19 infection and the blood disorder successfully. The patient recovered.

In each instance listed above (lupus, COVID-19, and adenoviral vaccines), it is believed activated autoantibodies cause inflammation, which results in diffuse blood clots.

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Inflammation Destroys Tissue, and Kills
In discussing TTP, and the inflammatory effects of COVID-19 on brain tissue, I hope to convey the serious nature of unchecked inflammation, no matter the cause. If someone has lupus, it is extremely important for attending physicians to have this information.

Lupus and Infection
Even common infections, which might be inconsequential in most patients, can precipitate inflammation. The physician in that case needs to be able to distinguish symptoms of a lupus flare from symptoms of the infection.

In response to the question of my friend's GP: what difference would a diagnosis of lupus make? The difference can mean avoiding severe organ damage, or even death. Any time someone with lupus is sick, a flare may be precipitated. Any flare should be cut off before it has a chance to escalate.

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Finally, wise patients become custodians of their own health. Patients, armed with information about the diagnosis of lupus, are better able to monitor fluctuations of their disease and head off problems before these become significant.

So what did my friend's doctor do in response to the query about lupus? Happily, the doctor seems to have done most of the right things. In addition to the usual blood panel, a bunch of specific tests were run.

ANA (Anti-nuclear Antibodies), Speckled Pattern)
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Image credit: Simon Caulton. Used under a CC 3.0 license. Speckled pattern of ANA is suggestive of certain diseases. It is one of the patterns associated with lupus.

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Two tests looked directly for the presence of autoantibodies:
ANA (antinuclear antibodies): these autoantibodies are present in many conditions, and in healthy people. However, they are found in 98% of people who have lupus
Anti-dsDNA (anti-double double stranded DNA): these autoantibodies are found in many conditions, but are considered to be highly suggestive of lupus.

And then the doctor looked for indications that inflammation might be at work, especially if there might be kidney involvement . The National Kidney Foundation suggests that about 90% of people with lupus have kidney inflammation, although actual damage needing treatment may be found in a much smaller number of people. The GFR (kidney filtration rate) (which the doctor asked for) might show that.

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A whole bunch of other tests that might indicate general inflammation were run. Also, the doctor ran tests to rule out other diseases (such as rheumatoid arthritis).

What were the results? In all, good news. Everything was negative, except the ANA, which was mildly positive for lupus. My friend was left with an array of rheumatological symptoms and no definitive diagnosis. Lupus remains a possibility, particularly since there are family members who have it, but right now she gets a pass.

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Accent pictures (Puzzle, Test Tube, Geometric Design, Microscope): I created them for this blog.
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Some Sources Used in Writing This Blog

1.https://hive.blog/health/@agmoore/time-to-throw-away-the-diagnostic-criteria-for-systemic-lupus
2.https://www.hss.edu/conditions_managing-arthritis-in-lupus.asp#commonarthritis
3.https://lupus.bmj.com/content/2/1/e000084
4.https://www.nursingcenter.com/ce_articleprint?an=00006205-201404000-00006
5.https://www.hopkinsmedicine.org/news/media/releases/diagnostic_errors_more_common_costly_and_harmful_than_treatment_mistakes
6.https://www.lupus.org/resources/research-on-photosensitivity-among-people-with-lupus
7.https://agribusiness.purdue.edu/consumer_corner/thats-probably-not-a-zebra/
8.https://www.medicalnewstoday.com/articles/differential-diagnosis#definition
9.https://www.jucm.com/wp-content/uploads/2020/12/2006-12-10-15-Clinical-Feature.pdf
10.https://ard.bmj.com/content/78/6/736
11.https://www.sciencedaily.com/releases/2021/04/210416120044.htm
12.https://pubmed.ncbi.nlm.nih.gov/15351310/
13.https://www.rollingstone.com/music/music-news/j-dilla-dead-at-thirty-two-90005/
14.https://onlinelibrary.wiley.com/doi/full/10.1002/1529-0131%28200101%2944%3A1%3C170%3A%3AAID-ANR22%3E3.0.CO%3B2-T
15.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7335418/
16.https://www.cdc.gov/vaccines/acip/meetings/downloads/slides-2021-04-23/03-COVID-Shimabukuro-508.pdf
17.https://www.bmj.com/content/372/bmj.n699/rr-24
18.https://ard.bmj.com/content/80/5/e77
19.https://www.betterhealth.vic.gov.au/health/ConditionsAndTreatments/lupus-and-infections#diagnosing-an-infection-in-someone-with-lupus
20.https://www.healthline.com/health/blood-tests#routine-tests-and-others
21.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6142026/
22.https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/
23.https://labtestsonline.org/tests/anti-dsdna
24.https://kidneyhi.org/lupus-and-kidney-disease
25.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4635373/

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Thank you for reading my blog

Hive on



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13 comments
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Excelente información, de verdad es muy importante tener un diagnóstico claro de alguna enfermedad que tengamos y saber las complicaciones que podamos tener, de contraer alguna otra enfermedad, como el covid19 por ejemplo; El lupus antes era una enfermedad letal, que ahora gracias a Dios se puede controlar y aunque aún no tiene cura, los que los padecen pueden tener una mejor calidad de vida.

Aunque aquí en Venezuela cualquier enfermedad es más difícil de tratar por la escasez y costosos que son los medicamentos, yo soy una paciente inmunosuprimida y además tengo un problema de malabsorción intestinal, por lo que padezco de anemia y a veces me cuesta conseguír el suplemento de hierro que es algo tan básico.

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Thank you for reading my blog, friend @kismeri. And yes, there is excellent care available for most lupus patients. It is important that people understand the quality of life can be very good with proper attention.

I am sorry to learn about your autoimmune challenges. Malabsorption is a serious problem. I know in Venezuela right now everyone is challenged to find services and medicine. I hope you can find the supplementation necessary to treat your condition. I feel deeply for my friends in Venezuela and hope these difficult times will pass.

Be well my friend, and peaceful.

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(Edited)

Gracias por tus buenos deseos, Amén 🙏🙏🤗🤗 Que estés muy bien!

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Excellent blog about lupus. Someone in my family has it and has struggled for many years. Great job as always.

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Thank you, my friend, for that encouraging comment. And thank you for reading my blog :)

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Excellent post. Everything I wanted to read about diagnostic methods and the value of accuracy in diagnoses. I was diagnosed as having heartburn instead of pericarditis. It was a very painful lesson in making sure doctors know what the heck they're doing before I leave their office. Upvoted and promoted.


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Thank you very much. I appreciate that comment. Thank you for promoting my post. If just one person gets something out of it, that was worth the time and work it took to write.

A doctor once told me, "If you're not going to do what I say, I'm the wrong doctor for you." He was right. I never went back.

I hope the pericarditis cleared up quickly and without long-term consequence. My brother had endocarditis, and that was quite serious.

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I was in the military at the time. I wasn't allowed to see other doctors. I stayed undiagnosed for 6 months until I ended up in the ER. It took me 4 years to recover to some normalcy. Your article brought some memories back, let me tell you, lol.


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I am so sorry....

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What? No, no need at all! It made me better and it got me out of a toxic workplace and a thankless job. I met my wife shortly after I left and we have two beautiful baby boys. I've finished two Bachelor's degrees and I'm almost done with a Master's degree. I'm starting a new job soon as a Senior Business Analyst.

If I stayed, I probably wouldn't have made it. By leaving, I found a brand new world.


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Nice post although I feel attacked as a doctor

The reason we think of the usual than the usual is simple, common things tend to occur commonly.

Most times thinking of the unusual might cost a lot and in turn affect the pockets of patients.

Well the doctor shouldnt have answered that way but I guess its better to rule out the common things before looking far.

Very engaging post

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Thank you very much for reading my blog and finding value in it. Don't feel attacked. I love some of my doctors. They are not only smart, but kind. They also don't practice medicine on me, but with me. They are my partners in treatment decisions.

As for looking for the usual, of course! That's my point. If someone has lupus, that's something the doctor has to think about every time the patient has a medical issue. Lupus is no longer a zebra.

The fact that you read a blog by a lay person, and responded to it, suggests to me that you are a doctor who listens. Your patients are lucky. I wish you wisdom and insight as you go forward in this most important profession.

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thank you for your comment and thank you for sharing

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