6 posts tagged “systemic lupus erythematosus”

What’s the lupus/kidney connection? Our healthcare pros explain lupus nephritis and more

Posted 11 months ago by

“Kidney” is one of the top terms that PatientsLikeMe members are searching for in the lupus forum (click here to join the site for forum access). Last year’s news of Selena Gomez’s kidney transplant put a spotlight on the lupus/kidney link. Lupus can affect your kidneys in a few different ways, so we asked our Health Data Integrity Team (our in-house clinical healthcare professionals) to help us learn more.

What is lupus nephritis?

Lupus nephritis is an inflammation of the kidneys caused by an autoimmune response. Lupus can cause an autoimmune attack on various parts or tissues in your body, including the kidneys. During this attack, the immune system turns on itself and tries to fight off “foreign invaders” — which are actually your body’s own healthy cells. This can trigger inflammation and swelling of the tissue in an attempt to eliminate foreign bodies.

Lupus nephritis can impair the kidneys so they’re not able to properly remove waste or control fluids in your body. Left untreated, nephritis can lead to more serious kidney disease. Cases may range from mild to severe, depending on the signs and symptoms and what areas of the kidney are involved.

Here are some symptoms of lupus nephritis:

  • Unexplained swelling in your feet, ankles, legs, fingers, arms or eyelids
  • Unexplained weight gain
  • Blood in the urine, or urine that looks foamy or frothy
  • Increased need to urinate, especially at night
  • Headache and/or dizziness
  • High blood pressure

Should you get screened?

About 50 percent of people with systemic lupus erythematosus (SLE) develop lupus nephritis, so all patients with SLE should be regularly screened for signs of nephritis. Not everyone will have the symptoms listed above, so screening tests can be helpful in diagnosis. Screenings may include:

  • A kidney biopsy — A tiny piece of tissue is removed and examined under a microscope to determine if there is any scarring or inflammation in the tissue.
  • Urine tests — An abnormal urine test may show there are cell fragments or proteins in the urine, which may signal improper filtering in the kidneys.
  • Blood tests — If the kidneys are not properly functioning, there may be excess fats and other small molecules present in the blood.

How is lupus nephritis treated?

Although lupus nephritis is a serious condition, it can be treated. The goal of treating lupus nephritis is to return normal kidney function and prevent any further kidney damage. Treatments may vary depending on the severity of the disease, but two options are:

  • Steroids such as prednisone, to help reduce the inflammation.
  • Immunosuppressive drugs (either in combination with steroids or alone). These drugs help suppress the immune system and further reduce inflammation. Immunosuppressive drugs may include cyclophosphamideazathioprine and mycophenolate. Although cyclophosphamide has some significant kidney-related side effects, it may help prevent lupus nephritis from getting worse. With proper dosing and monitoring by your healthcare provider, you can properly manage and minimize side effects.

Other lupus-related kidney issues

Other kidney disorders can occur as a result of lupus itself or as a side effect of treatment. For example, immunosuppressive drugs taken for lupus can weaken the immune system and increase your body’s susceptibility to infections, particularly urinary tract infections (UTI).

UTI symptoms may include frequent urination, pain or burning during urination, and urinary urgency. If left untreated, the bacteria from the urinary tract infection may travel up into the bladder and kidneys, causing more serious infections that may be harder to treat. If you experience any of these symptoms, let your healthcare provider know immediately in case you need antibiotics to treat the infection.

Some medications used to treat lupus may also cause signs and symptoms of kidney impairment that may be similar to signs of lupus nephritis. Each of the drugs used to treat lupus have their own set of unique side effects, most of which are manageable. If you have any specific questions regarding the risks of the medication you’re taking, ask your healthcare provider for a more detailed and individualized explanation of how your medication can affect you.

It’s important to tell your provider about any new symptoms you experience because they may point to lupus-related complications. Also, remember to consult your healthcare provider before starting any new medications or stopping your treatment.

Are you living with lupus and kidney problems? Join PatientsLikeMe or log in to connect with thousands of others who can relate.

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Zoodles! Let’s dish on lupus/food + swap recipes

Posted July 27th, 2018 by

If you’re living with lupus, have you found any particular foods that affect you and your condition — for better or worse?

Member Jeanette (JeanetteA6872), a member of the 2018 Team of Advisors who’s living with systemic lupus erythematosus (SLE), shares which ingredients she tries to include or avoid in her diet, plus three of her favorite recipes (psst—one involves zoodles!).

Food Q&A with Jeanette

Jeanette says she turned to dietary changes when she stopped taking Plaquenil due to severe side effects, including retina damage. “I had nothing to lose — I signed up for Tony Robbins’ Unleash the Power Within [a self-help program] that made me look at myself and my relationship with food differently,” she says. “I started logging my food intake for a few weeks on and off, I noticed how some of my favorite foods were causing me some issues ranging from stomach pains to full inflammation. That’s when I started paying close attention to what my body was telling me and I needed to do something about it.”

Here’s what else she shared with us in a recent Q&A. Everyone is different, so these foods and dietary changes may not affect you and your lupus the same way. Talk with your doctor or a registered dietitian about finding foods that work for you.

Have you noticed any specific ways that your diet or certain foods affect your symptoms?

I didn’t go on any specific diet at first, I started eliminating certain foods like sugar (which was causing major fatigue and pain), garlic (causing major inflammation in my knees), eggplants (fatigue and pain in my feet), bean sprouts (stomachaches) and alfalfa (full inflammation and full flare) — some of the known foods that lupus patients shouldn’t eat [learn more at lupus.org].

Then I noticed how meat was causing me fatigue and I noticed inflammation directly in my knees. I tried giving up red meat for two weeks, and I felt good and noticed a reduction of pain. Then I gave up chicken the following two weeks and felt even better. It was so amazing that I decided to give it up for good. After the first few months without meat, my doctor started noticing my blood work was improving drastically, so she began reducing my medications since I was no longer flaring or feeling pain. After a full year she reduced all of my medications to zero and even stopped my infusion.

I notice that if I eat too many potatoes like French fries, baked potatoes or mashed potatoes, as well as tomatoes, salsa, mushrooms and peppers, ice cream and cheese, I feel a little stiffness, so I know it’s too much. I really try to avoid processed and fried foods in general as I immediately notice stiffness.

I do still eat gluten and dairy products, just not every day. Everything in moderation works best, I’ve noticed. If something bothers me this week, I know not to repeat it.

Are there any foods that you try to eat often?

I don’t eat many of the same foods daily. I drink my shakes, but I like a variety of foods from pastas, salads, homemade cauliflower crust pizza, rice and beans, and I started eating fish again, so that’s more protein. There are meat substitutes like Gardein, Beyond Meat and black bean burgers that make great meals.

With the new eating style, I knew I needed to find some type of supplement for my vitamins and minerals because you get so many different vitamins from animal products and I wasn’t eating the same way as before. I tried Herbal Life, then Shakeology, then Modere, and none agreed with me because I have so many allergies. So I gave Isagenix one last try. It was perfect for me. Wow — my blood work started coming back so good, my doctor asked me what my secret was, since I [also] started working out and feeling even more amazing. I feel as if my life is back.

Do you have a few favorite recipes you’d like to share?

(Click on the links for a printable version of these recipes picked by Jeanette!)

Veggie scramble – This veggie-packed egg dish is scrambled in coconut oil and topped with avocado and tomato

Citrus fish tacos – Lettuce leaves serve as the “tacos” in this tilapia recipe, complete with mango salsa

Creamy zucchini pasta with shrimp – “Zoodles” (julienne-peeled zucchini “noodles”) and an avocado-basil “cream” sauce? Yum!

Which foods do you eat or avoid with your lupus in mind? Please add a comment below or join PatientsLikeMe to chime into this forum discussion!

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