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TJ Wolf
Life With Lupus: Comorbidities
2021-06-20
Life With Lupus: Comorbidities
Picture of my own hand when Raynaud's triggers.TJ Wolf/TJ Wolf
About The Author
I have the deadly disease known as Lupus. The version of Lupus I have is the most common, Systemic Lupus Erythematosus (SLE). True to its name, SLE is a systemic condition throughout the body. In addition, I have Lupus Anti-Coagulant and Lupus Anti-Phospholipid which causes my Lupus to impact my blood.
Disclaimer
This article is not intended to be medical advice.
The article is simply my own story as someone with SLE and excerpts from other articles I've studied.
As always, you should consult medical professionals with regard to your own health and decisions.
What Are Comorbidities?
An article from verywellhealth defines a Comorbidity as the following...
Comorbidity is the presence of two or more conditions occurring in a person, either at the same time, or successively (one condition that occurs right after the other). Conditions described as comorbidities are often long-term (chronic) conditions.
When two or more illnesses or conditions happen at the same time or successively, it’s also referred to as comorbid. Other names for comorbid conditions include co-occurring conditions, coexisting conditions, and less commonly, multiple chronic conditions, as well as multimorbidity.
Common SLE Comorbidities
Lupus Foundation of America
So what are some common Comorbidities for persons with SLE?
Per the Lupus Foundation of America's search resources page...
Common diseases that overlap with lupus:
Autoimmune thyroid disease
Celiac disease
Myasthenia gravis
Antiphospholipid syndrome
Rheumatoid arthritis
Polymyositis
Dermatomyositis
Scleroderma
Sjögren’s syndrome
National Center for Biotechnology Information (NCBI)
Per a study on the PubMed Central® (PMC) archive literature at the U.S. National Institutes of Health's National Library of Medicine (NIH/NLM), the following comorbidities and prevalence percentages were determined among a sample of SLE patients...
Comorbidity: Prevalence
Thyroid disease: 45.6%
Mental disorder: 42.1%
Depression: 26.7%
Anxiety disorder: 10.7%
Obesity: 35.3%
Dyslipidemia: 33.3%
Hypertension: 24.6%
Osteoporosis and osteoporotic fracture: 22.3%
Cardiovascular disease: 20.8%
Allergic disorders: 20.6%
Gastrointestinal disease: 19.0%
Infectious disease: 12.8%
Neurologic disease: 10.3%
Cerebrovascular disease: 2.5%
Kidney disease: 9.5%
Respiratory disease: 9.3%
Diabetes mellitus: 8.8%
Malignant disease: 4.8%
Skin disease: 3.3%
Hematologic disease: 2.3%
Johns Hopkins Medicine
An article on the Johns Hopkins Medicine website discusses complications related to SLE...
There are several complications related to systemic lupus erythematosus (SLE) and its treatments you should be aware of:
Skin scarring
Joint deformities
Kidney failure
Stroke
Heart attack
Pregnancy complications
Hip destruction (also called avascular necrosis)
Cataracts
Bone fractures
Cardiovascular disease, not lupus itself, is the number one cause of death in people with lupus. (It is actually the number one cause of death around the world.) The number two cause of death for people with lupus is infection.
My Own SLE Comorbidities
As the author I am willing to share my own SLE comorbidities with you for knowledge sharing and possibly to relate and empathize with your own situation as a reader.
Doctor typing on a laptop computer.National Cancer Institute/Unsplash
For each of the following I am told by my physicians...
your tests show the evidence (examples: blood tests, X-rays, MRI)
well that's part of having Lupus
we see this as Lupus progresses
that's seen commonly among Lupus patients
that's usually related to the high risk medications you take
About 1% to 5% of people in the United States have misbehaving antibodies (proteins) in their blood that can lead to APS. Normal antibodies fight infections, but with this condition, things called “autoantibodies” attack certain fats that help with blood clotting. And so your blood starts to clot abnormally.
APS antibodies can sometimes cause:
Blood clots, which can lead to heart attack, stroke, or pulmonary embolism
Miscarriages and other pregnancy complications
Low platelet levels in your blood
Rashes and skin ulcers
(about half of people with lupus also have APS)
Picture of blood test vials.National Cancer Institute/Unsplash
I've tested positive for anti-phospholipid antibodies 4 times (which is 100% of the times I was blood tested specifically for those antibodies). Per my physician I've met all the criteria except full blown stroke, observed clot, of deep vein thrombosis (DVT). Given TIA history, my physician was confident in the "hypothesis diagnosis" that I have APS.
A transient ischemic attack (TIA) is a temporary blockage of blood flow in the brain that causes brief stroke symptoms. A transient ischemic attack is often called a mini-stroke. It is considered a warning sign that a more serious stoke will happen in the future. Transient ischemic attack symptoms do not last long. They may include weakness on one side of the body, dizziness, blurred vision, confusion, and speech problems. A TIA is a medical emergency.
Ambulance with bright flashing lights headed down street.camilo jimenez/Unsplash
To read more about my own TIA experience, please see my article: Mortality
When you have VT, the electrical signals in your ventricles go off the wrong way. The pulses coming from your SA node are also affected.
Most regular heart rates are in the range of 60 to 100 beats a minute. Ventricular tachycardia can result in rates of 170 beats a minute or even more.
When this happens, your heart’s upper chambers don’t have time to refill and send that blood to the ventricles. So your blood doesn’t get pumped throughout your body the way it should.
In some instances, this condition can lead to ventricular fibrillation, a condition that causes very rapid and uneven heartbeats of 300 or more a minute. It is a life-threatening emergency.
In my situation, I was referred to a Cardiologist when my resting heart rate was around 100-125 beats per minute and any amount of exertion such as walking would place me in the 150-175 beats per minute range. Fortunately my Apple Watch (a highly useful gift from my parents) tracked and stored the data for the Cardiologist to see. His hypotheses for causes included either I was born with a high heart rate or inflammation from Lupus was impacting my heart's muscle or sac. Either way it was a diagnosis of VT and I take medication to slow it down.
Small fiber sensory neuropathy (SFSN) is a disorder in which only the small sensory cutaneous nerves are affected. The majority of patients experience sensory disturbances that start in the feet and progress upwards. These patients have what is called a length-dependent SFSN.
The symptoms of small fiber sensory neuropathy are primarily sensory in nature and include unusual sensations such as pins-and-needles, pricks, tingling and numbness. Some patients may experience burning pain or coldness and electric shock-like brief painful sensations...In most patients, these symptoms start in the feet and progress upwards. In advanced cases, it may involve the hands.
Picture of a person receiving acupuncture needles.Katherine Hanlon/Unsplash
This drove me nuts for years and still does!
Although it is treated now with medication and occurs less frequently and intensely. Thank goodness.
To quickly summarize what was happening, imagine yourself being stung or bitten by invisible bees or fire ants randomly throughout your day, no matter what activity you were doing. Then occasionally your feet, hands, or fingers would go numb without explanation. And to top it all off, occasionally you would feel as though someone poured cold water on your head or down the back of your legs.
Arthritis & Osteoarthritis (OA)
Per WebMD, Arthritis and Osteoarthritis are defined as...
Arthritis is a general term that means inflammation of the joints. Osteoarthritis, commonly known as wear and tear arthritis, is the most common type of arthritis. It is associated with a breakdown of cartilage in joints and can occur in almost any joint in the body. It commonly occurs in the weight-bearing joints of the hips, knees, and spine. It also affects the fingers, thumb, neck, and large toe.
Osteoarthritis -- also called OA -- usually does not affect other joints unless previous injury , excessive stress or an underlying disorder of cartilage is involved.
Cartilage is a firm, rubbery material that covers the ends of bones in normal joints. Its main function is to reduce friction in the joints and serve as a "shock absorber." The shock-absorbing quality of normal cartilage comes from its ability to change shape when compressed (flattened or pressed together).
Arthritis in my back, tailbone, shoulders, hands, and fingers. Osteoarthritis in both knees. Orthopedist who conducted MRIs on my knees about 10 years ago said my knees were in the condition of most 80-90 year old patients he sees. Yay me!
Secondary Raynaud's Disease
Per Johns Hopkins Medicine, Raynaud's is defined as...
Raynaud’s phenomenon is a problem that causes decreased blood flow to the fingers. In some cases, it also causes less blood flow to the ears, toes, nipples, knees, or nose. This happens due to spasms of blood vessels in those areas. The spasms happen in response to cold, stress, or emotional upset.
Raynaud’s can occur on its own, known as primary form. Or it may happen along with other diseases, known as secondary form. The diseases most often linked with Raynaud’s are autoimmune or connective tissue diseases such as:
Lupus (systemic lupus erythematous)
Scleroderma
CREST syndrome (a form of scleroderma)
Buerger disease
Sjögren syndrome
Rheumatoid arthritis
Occlusive vascular disease, such as atherosclerosis
Polymyositis
Blood disorders, such as Cryoglobulinemia
Thyroid disorders
Pulmonary hypertension
The primary form of Raynaud’s is the most common type. It often begins between ages 15 and 25. It’s less severe than secondary Raynaud’s. People with primary Raynaud’s do not often develop a related condition.
This is my hand when it triggers...
Picture of my own hand when Raynaud's triggers.TJ Wolf/TJ Wolf
Gout is a health problem that causes inflamed, painful joints. The symptoms are caused by deposits of urate crystals at the joints...In truth, anyone can get gout. Gout affects more men than women.
This condition is a form of inflammatory arthritis that results in painful attacks in the joints. It can cause swelling and redness, and in some cases, it can lead to lumpy deposits that can be seen under the skin. It can also lead to the development of kidney stones.
Dealing with this as a type this article today!
Here's my own personal and hopefully comedic description to understand what it is like (don't do this of course!)...
Sprain your foot and/or ankle in all directions.
Pour acid on it.
Stick your foot in a bucket of angry fire ants.
Light your foot on fire.
High Risk Medications
So this was something I learned looking at my medical records. You are actually "diagnosed" via Current Procedure Terminology (CPT) and International Classification of Diseases (ICD-10) codes for taking high risk medications.
Picture of various medication pills.freestocks/Unsplash
For me it's the following due to these potential high risk side effects I've learned about...
Azathioprine (liver, kidney, blood cancer)
Plaquenil (retina toxicity)
Prednisone (bone fractures, cardiovascular risks)
...and these for their addiction risks and withdrawla issues from an abrupt stoppage...
Pregabalin
Duloxetine
Tramadol
Buprenomorphin
Obesity
I probably don't need to define this one for us, right?
I am more over weight than any other time in my life. And I swear to you I've been trying to combat it with a healthier diet, lower calorie meals, smaller meals, and increased activity.
My Primary Care Physician and my Rheumatologist tell me I am fighting a losing battle against my metabolism due to the doses of Prednisone and Pregabalin.
Plus my "increased activity" is probably a joke to most and not exactly a high intensity workout. This due to the intense pain and ridiculous fatigue that results from even the smallest chores or low intensity actions.
With that said, I keep trying. What else can I do?
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