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.

Photo by Liza Summer on Pexels.com

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!

I’d Never Really Thought About It

Last week, we celebrated World Kidney Day. Have you seen Otsuka Pharmaceutical Companies’ World Kidney Day post featuring Steve Winfree, several others, and me? We all shared messages about dealing with kidney disease for other kidney disease patients. 

While World Kidney Day has passed, it’s still National Kidney Month. During this time, I decided to look for topics I hadn’t thought about before. I researched several only to find they had nothing to do with the kidneys. Then I hit upon magnesium. Bingo! 

Since my cancer dance, I’ve been taking 400 mg. twice a day for healing. [Chemo is really hard on the body.] I had no idea I was helping my kidneys, too. Of course, I had to know how this worked and then share it with you. 

Let’s start with what magnesium is. I liked the Kidney Coach’s down to earth explanation: 

“Magnesium is one of the key minerals that the body needs to stay healthy, in fact it is needed for more than 300 biochemical reactions in the body. Approximately 60% of the body’s magnesium is present in bone, 20% in muscle and another 20% in soft tissue and the liver. Less than 1% of total magnesium is in blood serum and our body works hard to try and keep these levels under tight control.”   

I’m not certain, but I’m guessing it’s the blood serum’s 1% of magnesium that concerns us. But let’s find out for sure. Here’s what WebMD had to say: 

“Magnesium is a mineral that is important for normal bone structure in the body. People get magnesium from their diet, but sometimes magnesium supplements are needed if magnesium levels are too low. Low magnesium levels in the body have been linked to diseases such as osteoporosis, high blood pressure, clogged arteries, hereditary heart disease, diabetes, and stroke.” 

Hmm, while that doesn’t answer the implied question, it does bring up other issues. Did you catch ‘high blood pressure’ and ‘diabetes’ in the above quote? Those are the two leading causes of chronic kidney disease. 

Maybe Harvard Health Publishing, Harvard Medical School can help us out here: 

“Magnesium helps regulate hundreds of body systems, including blood pressure, blood sugar, and muscle and nerve function. We need magnesium to help blood vessels relax, and for energy production, and bone development. Just like potassium, too much magnesium can be lost in urine due to diuretic use, leading to low magnesium levels.” 

Think about it: relaxed blood vessels allow the blood to flow through your body more easily, thereby avoiding blood pressure build up or high blood pressure.  Unregulated blood sugar leads to diabetes. It’s starting to make sense, isn’t it? 

 Jumping back to the blood serum, look what I found at ANA Journals: 

“… in patients with CKD, we observed that higher serum magnesium is associated with lower SBP and lower DBP at baseline in the CRIC Study. Higher serum magnesium is associated with a lower risk of hypertension according to multiple definitions. Furthermore, regarding hard clinical outcomes, higher serum magnesium is associated with a significantly lower risk of CKD progression during long-term follow-up ….” 

I needed some of that alphabet soup defined, so maybe you do, too. 

SBP: systolic BP [top number – blood pressure when the heart is beating] 

DBP: diastolic BP [bottom number – blood pressure when heart is at rest] 

CRIC: Chronic Renal Insufficiency Cohort [conducts studies to further the health of those with CKD] 

Well, what happens if you have too much magnesium in your body? MedicalNewsToday was able to help us out with this question: 

“Most cases of hypermagnesemia occur in people who have kidney failure. Hypermagnesemia occurs because the process that keeps the levels of magnesium in the body at normal levels does not work properly in people with kidney dysfunction and end-stage liver disease. 

When the kidneys do not work properly, they are unable to get rid of excess magnesium, and this makes the person more susceptible to a build-up of the mineral in the blood. 

Some treatments for chronic kidney disease, including proton pump inhibitors, can increase the risk of hypermagnesemia. Malnourishment and alcoholism are additional risk factors in people with chronic kidney disease.” 

Doesn’t sound good, especially since we have CKD. We’d better find out what the symptoms are. According to Mercy Health: 

“Hypermagnesemia has serious symptoms. They can cause problems with your heart and difficulty breathing. Some people experience signs of shock or go into a coma. Other symptoms of hypermagnesemia include: 

• Very low blood pressure 
• Nausea and vomiting 
• Headaches …. 

A normal level of magnesium in the blood is between 1.7 and 2.3 milligrams per deciliter.” 

As best I can figure out [Remember, I’m not a doctor.], the treatment is dialysis or diuretics. However, these each have further treatment necessary. 

Let’s not panic now. Remember that this is pretty rare. Hypomagnesemia? Not so much. The Egyptian Journal of Internal Medicine makes that clear: 

“… hypomagnesemia is a common electrolyte disorder in non-dialysis CKD population and is independently associated with proteinuria. Hypomagnesemia is a risk factor for inflammation, anemia, and hyperparathyroidism in pre-dialysis CKD population.”   

I went to my trusted source, the Cleveland Clinic, for the symptoms of low magnesium: 

“Tremors. 

Tetany (muscle spasms, muscle cramps and/or numbness in your hands and feet). 

Abnormal eye movements (nystagmus). 

Fatigue and weakness.” 

Now, of course, we need to know how it’s treated. I read several studies to find this one simple treatment on National Center for Biotechnology’s site: 

“Mg [magnesium] supplementation was safe and well tolerated with no adverse events related to Mg treatment and no incidences of symptomatic hypermagnesemia.”   

In other words, OTC magnesium pills. 

This has definitely been one of the harder blogs I’ve written. I kept having to dig and dig for information. Let’s not take anything for granted. Do speak with your nephrologist if you have questions or think you may have low or high magnesium. All you’ll need to be sure is a blood test. 

Until next week, 

Keep living your life!  

Oh, Those Dimples

 Most often when you see a doctor, he or she will press your leg with one of his fingers, look at the indent made that quickly pops back to normal, and murmur, “Hmmm.” That’s what my rheumatologist did last time I saw her, only she didn’t say, “Hmmm.” She said, “Look at that, Gail.” Uh-oh. 

I looked… and saw the indent still there. I know what that meant: edema. My favorite dictionary since high school almost 50 years ago, Merriam-Webster, defines edema for us: 

“an abnormal infiltration and excess accumulation of serous fluid in connective tissue or in a serous cavity 

 called also dropsy” 

So that’s what dropsy is. I’d always wondered.  

Back to the matter at hand. What does edema have to do with chronic kidney disease – if anything. 

Comprehensive Vascular Care, a practice in Michigan, offered some facts new to me: 

“It’s also linked to two other major diseases: 1 in 3 adults with diabetes and 1 in 5 adults with high blood pressure may also have kidney disease. All three conditions can lead to edema (swelling) in the legs.” 

I realized when I read this that my endocrinologist, primary care doctor, and nephrologist also always checked for edema. How did I not know the connection between their specialties and edema? After having written the blog for over a decade, it occurs to me that you may not know, either. Let’s find out together. 

We know the simple test of pressing a finger into your leg to determine if edema is present. MediceNet tells us there are other tests which may be used to figure out if you have edema: 

“X-ray 

Electrocardiogram (EKG) 

Blood tests 

Urinalysis (urine test)” 

Let’s say it is found that you have edema. Sure, it may be associated with your ckd, high blood pressure, or/and diabetes, but how? 

“You probably know your kidneys help eliminate fluids from your body through urination. But, kidneys also filter fluids, removing excess waste products from your blood. If your kidneys don’t work properly, fluid can get trapped in your body. Some waste products, such as sodium, can cause fluid to get trapped in your soft tissues and cause swelling under your skin.  

Kidney disease can cause swelling — or edema — anywhere in the body, but it’s most common in the feet, andkles [sic], and lower legs — all areas affected most by gravity. Some people also have swelling in their hands or face.  

If there’s a lot of swelling, you might notice that when you press the swollen skin with your finger, the area stays dimpled or ‘pitted’ even after you remove your finger. This is sometimes called pitting edema, and it’s typically associated with more severe edema.  

If your tissues continue to swell, this will put more pressure on your skin, and your skin may look shiny or taut in the affected areas. Your skin may also be more prone to cuts and sores because it’s stretched out. Some people develop skin ulcers, which are deep sores that take a long time to heal.” 

Thanks to Houston Kidney Specialist Center for the above information. 

By the way, let’s not forget that high blood pressure and diabetes are the two leading causes of ckd. 

Oh, the dimpling is more severe than I’d thought. Let’s see what else might cause edema. Nephrology Specialists of Tulsa helps out here: 

“Edema has many causes, some much more serious than others. It can result from standing or walking in excessive heat; sitting for prolonged periods; eating too much salt; getting sunburned; or being premenstrual or pregnant. More serious causes of edema include the following: 

Lymph-node problems (particularly after a mastectomy) 

Certain medications 

Venous insufficiency 

Congestive heart failure 

Cirrhosis 

Kidney disease 

Chronic bronchitis or emphysema 

Infection, injury or allergic reaction 

A lack of protein in the diet can also cause edema” 

While that’s interesting, I still want to know what it is in the kidneys specifically that causes edema. 

I found one answer on the Mayo Clinic’s site: 

“Nephrotic syndrome is a kidney disorder that causes your body to pass too much protein in your urine. 

Nephrotic syndrome is usually caused by damage to the clusters of small blood vessels in your kidneys that filter waste and excess water from your blood. The condition causes swelling, particularly in your feet and ankles, and increases the risk of other health problems.” 

Johns Hopkins Medical had more of the detail I was looking for: 

“Nephrotic syndrome results from damage to the kidneys’ glomeruli. These are the tiny blood vessels that filter waste and excess water from the blood and send them to the bladder as urine. 

Your glomeruli keep protein in the body. When they are damaged, protein leaks into the urine. Healthy kidneys allow less than 1 gram of protein to spill into the urine in a day. In nephrotic syndrome, the glomeruli let 3 grams or more of protein to leak into the urine during a 24-hour period.  

Nephrotic syndrome may happen with other health problems, such as kidney disease caused by diabetes and immune disorders. It can also develop after damage from viral infections. 

The cause of nephrotic syndrome is not always known.” 

So, what do we do about edema? According to National Health Service of the UK: 

“You may be advised to reduce your daily salt and fluid intake, including fluids in food such as soups and yoghurts, to help reduce the swelling. 

In some cases you may also be given diuretics (tablets to help you pee more), such as furosemide. 

Side effects of diuretics can include dehydration and reduced levels of sodium and potassium in the blood.” 

Okay, that’s just a bit confusing since as ckd patients who are not on dialysis, we are usually advised to drink plenty of water. 

I just pressed my thumb into my leg. No dimple! Why don’t you try it on yourself? 

Until next week, 

Keep living your life!