2 posts tagged “lupus symptoms”

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

Posted 10 hours 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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Hair loss with lupus: Tips and treatments others have tried

Posted 2 weeks ago by

Are you losing some of your locks because of lupus? Hair loss isn’t usually listed among the core symptoms of lupus, but it does affect many people living with SLE (systemic lupus erythematosus) and discoid lupus. It may be caused by lupus itself, certain treatments for lupus, or other illnesses or health issues (such as thyroid problems or nutritional deficiencies), according to the National Resource Center on Lupus. How do PatientsLikeMe members manage it and try to protect their mane?

How members manage hair loss

A number of PatientsLikeMe members with lupus have mentioned hair loss in the forum, and some say that hair loss was among their first cluster of symptoms pointing to lupus or a health condition. (Join PatientsLikeMe or log in to see members reporting hair loss, its severity and treatments they’ve tried.)

The same tips and products won’t work for everyone (and remember to check with your doctor before trying new supplements or treatments) — but here are a few pointers and perspectives from members who’ve had hair loss.

“My hair has been falling out for 2 1/2 years. What’s helped me with it is coconut oil, hair vitamins (vitamin B, folic acidbiotin). This doesn’t stop it from falling out but it speeded up healthy hair growth.”

“Plaquanil causes hair loss. I’ve been on it for over 15 years. My sink and shower usually gets clogged up from my hair loss. I get sew ins or braids and wear wigs occasionally. Just last month I got my hair cut short to eliminate breakages.”

“My hair started thinning and getting coarse before I was diagnosed, but it falls out in masses after 3 weeks on Plaquanil. I can’t afford hair extensions, but my doctor and hair dresser both told me about the same product that people with lupus and cancer use….and it is MAGIC. It is called Toppik and it comes in many different colors and forms. I find the powder fibers to work best.”

“I started taking 5000 units of Biotin. See a huge difference the first month and the second month I actually had to get my hair trimmed.”

Others say that supplements and treatments haven’t helped in their case, so they stick with short haircuts, wigs and/or extensions.

Lupus News Today rounded up “9 Tips to Prevent Hair Loss,” including talking with your doctor about your treatments, keeping stress levels low, getting plenty of rest, and avoiding sun exposure and certain kinds of lighting that may contribute to hair loss.

Have you experienced lupus-related hair loss? Join PatientsLikeMe or log in to connect with others on this topic today.

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