Two for One

I’ve just discovered that a family member has lupus nephritis. I need to remind myself what that encompasses. Looks like you’re coming on this quest with me this week. Just in case you’ve forgotten what lupus nephritis is, Doctors Health Press is here to help us out:

“Lupus Nephritis 

Lupus nephritis is inflammation of kidneys caused by the autoimmune disease known as systemic lupus erythematous (SLE)—also called lupus. This is where the body’s immune system targets its own tissues.

As many as 60% of lupus patients will later get lupus nephritis. The most common symptoms include dark urine, weight gain, high blood pressure, foamy urine, and the need for nighttime urination.”

I turned to Tampa General Hospital for more information:

““Nephritis causes one or both kidneys to become inflamed and leak protein into the urine. 

Nephritis is an inflammation of the kidneys. These important organs clean the blood by filtering out excess fluid and toxins, then eliminate those waste products from the body in the form of urine. Healthy kidneys do not remove proteins from the blood, which help the body absorb water. However, inflamed kidneys can leak protein into the urine, which can impair the body’s ability to absorb water and lead to tissue swelling.”

I figured the National Kidney Foundation would be the likeliest place to find the treatment for lupus nephritis [and it was, sort of]:

• “Corticosteroids (often called ‘steroids’)
• Immunosuppressive drugs
• Monoclonal antibodies
• ACE inhibitors and ARBs
• Diuretics
• Diet change”

Sort of? you ask. This has been the usual treatment plan, but there’s been an advancement. Yale Medicine explains:

“… the introduction of the two new therapies approved in 2021 that are specifically targeted for lupus. While older medications have been designed to suppress the body’s entire immune system, these new drugs target specific molecules.

There are now three of these targeted medications:

• Saphnelo (anifrolumab)—approved in August 2021. This monoclonal antibody (a protein that finds and attaches to one type of substance, called a cytokine, in the body) is designed to treat an excess of interferon activation, which plays an essential role in lupus inflammation. It’s administered by intravenous infusion.
• Benlysta (belimumab)—approved in 2011, is also a monoclonal antibody; it targets a protein that may help lessen the impact of abnormal cells that contribute to inflammation in lupus. It’s given by injection in the abdomen or thigh—or by intravenous infusion. It is approved for use in children ages 5 and older, and was recently approved in 2020 for adults who have lupus with kidney involvement.
• Lupkynis (voclosporin)—approved in January 2021, is the first oral medication FDA-approved for lupus nephritis. It works by helping to stop cells that cause inflammation in lupus nephritis, while protecting the kidneys from serious damage…. 

But it is the targeted treatments that could ‘move the needle’ on helping more patients reach remission, Dr. Koumpouras explains. With the three most recent medications, ‘we’ve [stet] actually improved the treatment outcomes for patients with SLE,’ he says. ‘We know that, statistically, patients will do better on these treatments.’”

Dr. Koumpouras is “Fotios Koumpouras, MD, director of the Yale Lupus Program, which provides a comprehensive evaluation of and treatment to lupus patients. It also offers programs, such as a combined rheumatology-dermatology clinic (the first of its kind in Connecticut), and access to clinical trials.”

We know any drug may have side effects. Following are those for these two new and one not so new treatments for lupus nephritis:

Daily Med for Saphnelo –

“The following side effects may get better over time as your body gets used to the medication. Let your healthcare provider know immediately if you continue to experience these symptoms or if they worsen over time.

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Common Side Effects

• Upper respiratory infection (34%)
• Bronchitis (11%)
• Infusion-related reactions (headache, dizziness, nausea; 9%)
• Herpes zoster infection (shingles; 6%)
• Cough (5%)

Other Side Effects

• Other respiratory infections
• Allergic reactions

Serious Side Effects

Contact your healthcare provider immediately if you experience any of the following.

• Severe infection: confusion, fever, difficulty breathing, weakness, cough, sweating, chills, stomach pain, diarrhea, burning sensation when you urinate
• Serious allergic reaction (anaphylaxis): difficulty breathing, tightness in the throat, hives, itching, fast heartbeat, nausea, dizziness, lightheadedness, swelling in the face or tongue“

Benlysta for Benlysta –

Infections

Infections could be serious, leading to hospitalization or death. Tell your healthcare provider right away if you have any of the following symptoms of infection: fever, chills, pain or burning with urination, urinating often, coughing up mucus, or warm, red, or painful skin or sores on your body.

Allergic (hypersensitivity) reactions

Serious allergic reactions can happen on the day of, or in the days after, receiving BENLYSTA and may cause death. Your healthcare provider will watch you closely while you are receiving BENLYSTA given in a vein (intravenous infusion) and after your infusion for signs of a reaction. Allergic reactions can sometimes be delayed. Tell your healthcare provider right away if you have any of the following symptoms of an allergic reaction following use of BENLYSTA: itching, swelling of the face, lips, mouth, tongue, or throat, trouble breathing, anxiousness, low blood pressure, dizziness or fainting, headache, nausea, or skin rash.

Mental health problems and suicide

Symptoms of mental health problems can occur. Tell your healthcare provider right away if you have any of the following symptoms: thoughts of suicide or dying, attempt to commit suicide, trouble sleeping (insomnia), new or worse anxiety, new or worse depression, acting on dangerous impulses, other unusual changes in your behavior or mood, or thoughts of hurting yourself or others.”

WebMD for Lupkynis –

“Headache, tiredness, dizziness, diarrhea, shaking, upset stomach, or abdominal pain may occur. If any of these effects last or get worse, tell your doctor or pharmacist promptly.

Temporary hair loss may occur. Normal hair growth should return after treatment has ended.

People using this medication may have serious side effects. However, you have been prescribed this drug because your doctor has judged that the benefit to you is greater than the risk of side effects. Careful monitoring by your doctor may decrease your risk.

This medication may raise your blood pressure. Check your blood pressure regularly and tell your doctor if the results are high. Your doctor may control your blood pressure with medication.”

Tell your doctor right away if you have any serious side effects, including: signs of kidney problems (such as a change in the amount of urine), mental/mood changes (such as confusion, changes in alertness), easy bruising/bleeding, numbness/tingling, vision changes.

Get medical help right away if you have any very serious side effects, including: seizures.

A very serious allergic reaction to this drug is rare. However, get medical help right away if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.”

This is neither meant to scare you or insinuate that you will experience these side effects. Your doctor will keep an eye on you to see if you develop any of these side effects. You need to keep an eye on you, too.

Until next week,

Keep living your life!

Lupus Joins the Family

There’s been a wedding in the family and the bride has lupus. Now there’s something I’d never thought about. I mean lupus, not weddings. Looks like it’s time to do just that. I’d heard the word and had my ideas as to what it meant, but let’s allow my favorite dictionary, the Merriam-Webster, define the disease for us:

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“any of several diseases characterized by skin lesions”

That’s a little too general for me. Let’s see if we can get more specific. The Lupus Foundation was tremendously helpful here:

“Systemic lupus erythematosus (SLE)

Systemic lupus is the most common form of lupus—it’s what most people mean when they refer to ‘lupus.’ Systemic lupus can be mild or severe.

Cutaneous lupus erythematosus

This form of lupus is limited to the skin and can cause many types of rashes and lesions.

Drug-induced lupus erythematosus

This is a lupus-like disease caused by certain prescription drugs.

Neonatal lupus

Neonatal lupus is not a true form of lupus. It is a rare condition that affects infants of women who have lupus and is caused by antibodies from the mother acting upon the infant in the womb.”

Of course, this is a kidney disease blog, so I wanted to know what, if anything, lupus had to do with the kidneys. By a process of elimination, we must mean SLE. We’re not interested in solely the skin, drugs, or newborns.

Notice, this is Systemic Lupus Erythematosus. You’re right; we need another definition. This time I turned to Dictionary.com for the definition of erythematosus:

“abnormally inflamed or reddened”

This is caused by the capillaries under the skin being dilated by accumulated blood.

Hmm, did you realize that the word ‘systemic’ was also a clue that this is the kind of lupus that affects the kidneys? Maybe a reminder of what the renal system is would be a good idea here. Oh, you should know that the renal system is also called the urinary system. Britannica.com offers a simple explanation of what this is:

“renal system, in humans, organ system that includes the kidneys, where urine is produced, and the ureters, bladder, and urethra for the passage, storage, and voiding of urine.”

We need another piece of information. Healthline has it:

“The immune system normally fights off dangerous infections and bacteria to keep the body healthy. An autoimmune disease occurs when the immune system attacks the body because it confuses it for something foreign. There are many autoimmune diseases, including systemic lupus erythematosus (SLE).”

Whoa! So, our bodies can attack our renal systems [among other systems]. If it does, what happens to us? The Mayo Clinic answers this question for us:

“Lupus nephritis is a frequent complication in people who have systemic lupus erythematosus — more commonly known as lupus.

Lupus is an autoimmune disease. It causes your immune system to produce proteins called autoantibodies that attack your own tissues and organs, including the kidneys.

Lupus nephritis occurs when lupus autoantibodies affect structures in your kidneys that filter out waste. This causes kidney inflammation and may lead to blood in the urine, protein in the urine, high blood pressure, impaired kidney function or even kidney failure.”

Reminder: nephritis means inflammation of the kidneys. Let’s see if we can get an explanation that draws this information together. The CDC has just the one:

“Systemic lupus erythematosus (SLE), is the most common type of lupus. SLE is an autoimmune disease in which the immune system attacks its own tissues, causing widespread inflammation and tissue damage in the affected organs. It can affect the joints, skin, brain, lungs, kidneys, and blood vessels. There is no cure for lupus, but medical interventions and lifestyle changes can help control it.”

We haven’t looked at the symptoms yet:

“SLE may first appear as extreme tiredness (fatigue), a vague feeling of discomfort or illness (malaise), fever, loss of appetite, and weight loss. Most affected individuals also have joint pain, typically affecting the same joints on both sides of the body, and muscle pain and weakness. Skin problems are common in SLE. A characteristic feature is a flat red rash across the cheeks and bridge of the nose, called a “butterfly rash” because of its shape. The rash, which generally does not hurt or itch, often appears or becomes more pronounced when exposed to sunlight. Other skin problems that may occur in SLE include calcium deposits under the skin (calcinosis), damaged blood vessels (vasculitis) in the skin, and tiny red spots called petechiae. Petechiae are caused by a shortage of cells involved in clotting (platelets), which leads to bleeding under the skin. Affected individuals may also have hair loss (alopecia) and open sores (ulcerations) in the moist lining (mucosae) of the mouth, nose, or, less commonly, the genitals.”

Thank you to MedlinePlus for the above information.

How can life style changes affect lupus, I wondered. Ah, but then I found WebMD’s list of triggers for a flare [episode]:

“Common lupus triggers include:

Overwork

Lack of sleep

Stress

Sun exposure

Fluorescent or halogen lights

Infection

Injury

Stopping your lupus medicines

Other lupus drugs”

The same site has suggestions for dealing with lupus on a daily basis.

Okay, all there is to cover now is diagnosing lupus. Hah! There’s so much more information available. A new site for us, National Institute of Arthritis and Musculoskeletal and Skin Diseases, offers the following as far as diagnosing:

“Asking about your medical history and symptoms, and, if necessary, reading your previous medical records.

Asking if anyone in your family has lupus or other autoimmune diseases.

Performing a complete physical exam.

Taking samples of blood for laboratory tests, such as:

Antinuclear antibodies (ANA), a sensitive test for lupus. Almost all people with lupus with [sic] have a positive ANA. However, having a positive ANA does not mean you have lupus since totally healthy people can have a positive ANA.

Antiphospholipid antibodies, anti-smith, and anti-double-strand DNA antibodies, which doctors order when you have a positive ANA and can help determine if you have lupus.

Complete blood counts, to check for low platelet counts, low red blood cell counts, and low white blood cell levels, which can happen if you have lupus.

Metabolic panel to look for changes in kidney function.

Taking urine samples to check for abnormal levels of protein in the urine.

Performing a biopsy of the skin or kidney (when labs indicate there may be a problem with the kidney) by taking a small sample of tissue to examine under a microscope.”

Notice the mention of the kidneys.

Until next week,

Keep living your life!