Thursday, August 16, 2012

Lupus and bladder issues, is it IC or Lupus Cystitis

     As I sit here writing this article in between restroom uses, I wonder why more research isn't done on lupus bladder problems.  Is it Lupus Cystitis or is it Interstitial Cystitis?  Is this a symptom of lupus or is it a different disease that overlaps with lupus?  I have compiled some information and hopefully it will help us deal with this annoying and debilitating problem.

The Renal (Kidney) System

Lupus is an autoimmune disease that can affect almost any part of your body, most often your joints, skin, kidneys, heart, lungs, blood, or brain. Your two kidneys are part of your renal system, which also includes two ureters, the bladder, and the urethra. As the primary organs of the renal system, your kidneys are responsible for:
  • maintaining the correct amount and type of body fluids
  • getting rid of waste products and toxic substances
  • regulating the hormones (chemical messengers) that help control blood pressure and blood volume
Lupus Nephritis
Inflammation of the nephrons, the structures within the kidneys that filter the blood, is called glomerulonephritis, or nephritis. Lupus nephritis is the term used when lupus causes inflammation in your kidneys, making them unable to properly remove waste from your blood or control the amount of fluids in your body. Abnormal levels of waste can build up in the blood, and edema (swelling) can develop. Left untreated, nephritis can lead to scarring and permanent damage to the kidneys and possibly end-stage renal disease (ESRD). People with ESRD need regular filtering of their body’s waste done by a machine (dialysis) or a kidney transplant so that at least one kidney is working properly.
Lupus nephritis most often develops within the first five years after the symptoms of lupus start, and usually affects people between the ages of 20 and 40. It is estimated that as many as 40 percent of all people with lupus, and as many as two-thirds of all children with lupus, will develop kidney complications that require medical evaluation and treatment. Because there are so few symptoms of kidney disease, significant damage to your kidneys can happen before you are diagnosed with lupus.
In the early stages of lupus nephritis, there are very few signs that anything is wrong. Often the first symptoms of lupus nephritis are weight gain and puffiness in your feet, ankles, legs, hands, and/or eyelids. This swelling often becomes worse throughout the day. Also, your urine may be foamy or frothy, or have a red color. Often the first signs of lupus nephritis show up in clinical laboratory tests on the urine. That is why testing your urine is so important.
Nephrologists are the physicians who treat the renal system. The tests they will use to diagnose lupus nephritis are: collection of urine, usually over a 24-hour period; blood tests; and often, a kidney biopsy.
Symptoms of Lupus Nephritis
  • Sudden and unexplained swelling, especially in the extremities (feet, ankles, legs, fingers, arms) or the eyes.
  • Blood in the urine.
  • Elevated blood pressure.
  • Foamy appearance in urine.
  • Increased urination, especially at night.
Because your body’s waste matter is processed by your kidneys, testing a sample of your urine can show any problems with the way your kidneys are functioning. The most common tests look for cell casts (fragments of cells normally found in the blood, or fragments of the tubules of the kidneys) and proteinuria (protein being spilled into your body because your kidneys are not filtering the waste properly).
Blood Tests
Certain blood tests can provide information about kidney damage and how well your body is filtering waste. The creatinine blood test is usually ordered along with a blood urea nitrogen (BUN) test to assess kidney function. A combination of blood and urine creatinine levels may be used to calculate a creatinine clearance. This measures how effectively your kidneys are filtering small molecules like creatinine out of your blood. Serum creatinine measurements (along with your age, weight, and gender) are used to calculate the estimated glo-merular filtration rate (EGFR), which is used as a screening test for evidence of kidney damage.
Kidney Biopsy
A kidney biopsy is done in a hospital. While you lie on your stomach your nephrologist will insert a very thin, long needle through the skin of your back and remove a tiny piece of tissue from one of your kidneys. The tissue will be examined under a microscope to determine how much inflammation or scarring is present.
Even though lupus nephritis is among the more serious complications of lupus, there are effective treatments. Prednisone and other corticosteroids are generally prescribed to stop the inflammation. Immunosuppressive drugs may also be used (with or in place of steroid treatments), such as cyclophosphamide (Cytoxan®), azathioprine (Imuran®), cyclosporin A, and mycophenolate mofetil (CellCept®). Medications developed for other illnesses are also being studied as treatments for lupus nephritis, including rituximab (Rituxan®), and eculizuimab (Soliris™).
Most people who develop lupus nephritis will live a normal lifespan as long as they continue to receive proper treatment.

Other Lupus-Related Kidney Disorders

Not all kidney problems in people with lupus are due to lupus nephritis.
  • Infections of the urinary tract, causing frequent urination or burning when urinating, are quite common.
  • Fluid retention or even loss of kidney function can be a side effect of non-steroidal anti-inflammatory drugs (NSAIDs) and medications such as aspirin.
  • Interstitial nephritis, which is inflammation of the connective tissue inside the glomerulus, can be a side effect of anti-inflammatory medications or antibiotics.
  • Thrombosis and vasculitis, two blood-related lupus symptoms, can damage the kidneys and may even cause kidney failure.
  • Lupus cystitis, which is inflammation of the lining of the bladder, may cause frequent urination and is associated with abdominal discomfort, including vomiting and weight loss.
  • Medications used to treat lupus may cause signs or symptoms of kidney disease that can be confused with lupus nephritis.
All of these complications can be treated, so if you develop any new symptoms, contact your doctor promptly,
Related Information
Kidney Issues and LupusMarch 2012 -- 15 Questions with Dr. Brad Rovin
Kidney Issues and LupusMarch 2011 -- 15 Questions with Dr. James Tumlin
Kidney Disease & Lupus
Summer 2007 issue of Lupus Now magazine
Kidneys and Lupus
Audio Podcast from Teleconference with Dr. Ellen Ginzler
Kidney Issues and Lupus
March 2010 -- 15 Questions with Dr. Michael Madaio
Kidney Involvement & Lupus
March 2009 webchat transcript with Dr. Brad Rovin
Kidneys and Lupus
March 2008 webchat transcript with Dr. James Tumlin
Kidney Involvement and Lupus
March 2007 webchat transcript with Dr. Ellen Ginzler

Clinical features of lupus cystitis complicated with hydroureteronephrosis in a Chinese population.


Division of Nephrology, Peking Union Medical College Hospital, Beijing, 100730, China.



Lupus cystitis is a relatively rare complication of systemic lupus erythematosus (SLE). The clinical characterization of it remains obscure. We sought to provide insight for timely recognition and diagnosis of lupus cystitis, and for efficacious management of this disease entity.


The clinical files of 18 patients with lupus cystitis treated at Peking Union Medical College Hospital were reviewed. Clinical manifestations, laboratory investigations, therapeutic measurements, and clinical outcomes were analyzed.


There were both male and female patients with a wide range of ages. The interval from onset of SLE to hydroureteronephrosis varied from 0 to 5 years. The most common clinical presentations were gastrointestinal (GI) symptoms, while urinary symptoms were less common and relatively mild. Lupus nephritis often presented concomitantly with lupus cystitis but was relatively less active pathologically. Laboratory findings showed a high rate of positive anti-SSA. Therapy of prednisone plus cyclophosphamide was effective for lupus cystitis. Delayed diagnosis and treatment may lead to irreversible obstructive uropathy and permanent loss of renal function.


Lupus cystitis may not be so rare as has been 
thought. The diagnosis of lupus cystitis should be 
considered when patients with SLE present with GI 
symptoms, and therapy should begin as early as 
[PubMed - indexed for MEDLINE]


Research has found that interstitial cystitis (IC) patients are 30 times more likely than the general population to have systemic lupus erythematosus (SLE).
As with IC, the cause of lupus is not known. It is more common in women and prevalence is greater among African-American, Hispanic, Asian and Native American women. Lupus is an immune system attack on healthy cells resulting in joint pain or swelling, muscle pain, fever with no known cause and the red “butterfly rash” on the face. It can damage joints, skin, blood vessels and organs.
There are several forms of lupus. The most common form is systemic lupus erythematosus, which affects many parts of the body. Discoid lupus causes a rash that doesn't go away. Subacute cutaneous lupus causes sores after exposure to sunlight.  Another type of lupus is caused by certain medicines.
There is no one test to diagnose lupus, and it may take months or years to make the diagnosis. There is no cure for lupus, but medicines and lifestyle changes can help to control the symptoms.

Related Resources

Learn More

For the latest information about lupus, please visit the Lupus Foundation website.

Revised January 12, 2011

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Interstitial cystitis/bladder pain syndrome fact sheet

What is interstitial cystitis/bladder pain syndrome (IC/BPS)?

Interstitial cystitis (int-uhr-STISH-uhl siss-TYT-uhss) (IC), is a chronic pain condition that affects the bladder. Many experts now call it bladder pain syndrome (BPS). Symptoms of IC/BPS include:
  • Pain or discomfort believed to be related to the bladder, which often gets worse as the bladder fills.
  • Feeling like you need to urinate right away (urgency), often (frequency), or both. Most people urinate between 4 and 7 times a day. Yet with IC/BPS, the bladder may hold less urine. People with severe IC/BPS urinate as often as 30 times a day.
  • Pain, pressure, or tenderness in the pelvic area and/or genitals.
  • Pain during sexual intercourse, or pain during ejaculation for men.
  • Ulcers and/or bleeding in the bladder.
The symptoms of IC/BPS vary from person to person and can change over time. Women's symptoms often get worse during their menstrual periods. Some people with IC/BPS feel only mild discomfort. Others have severe pain and symptoms.
IC/BPS can greatly affect a person's quality of life. Severe cases of IC/BPS can keep people from going to work or school and being socially active. It can affect a person's sex life and relationships. Living with a chronic condition can increase your risk of depression.

Who gets IC/BPS?

More than 1.3 million Americans have IC/BPS, but some studies suggest that millions more may have symptoms of IC/BPS. About 8 in 10 people with IC/BPS are women, although more men might have IC/BPS than we think. Men who actually have IC/BPS may be diagnosed with conditions that have similar symptoms, such as some prostate conditions. Most people with IC/BPS are diagnosed in middle age, but it may be diagnosed in teenagers and senior citizens as well.

What are the causes of IC/BPS?

No one knows what causes IC/BPS. The following factors may play a role in IC/BPS:
  • A defect in the bladder wall that allows substances in the urine to irritate the bladder.
  • A specific type of cell that releases histamine (HISS-tuh-meen) (chemical released during an allergic reaction) and other chemicals, which lead to symptoms of IC/BPS.
  • Something in the urine that damages the bladder.
  • Changes in the nerves that carry bladder sensations, making normal events, such as bladder filling, painful.
  • The body's immune system attacks the bladder.
It's hard to know if some of these factors actually cause IC/BPS or are part of the process that leads to IC/BPS. Also, the causes of IC/BPS in some people may be different than the causes in other people with IC/BPS. Studies of people who have IC/BPS suggest that it sometimes develops after an injury to the bladder, such as an infection. Genes also may play a role in some forms of IC/BPS. In some cases, IC/BPS affects both a mother and daughter or sisters. Still, IC/BPS does not commonly run in families.
Recently, researchers have identified a substance found almost only in the urine of people with IC/BPS. This substance appears to block the normal growth of the cells that line the wall of the bladder. Learning more about this substance might help researchers better understand the causes of IC/BPS and possible treatments.
Many women with IC/BPS have other conditions, such as irritable bowel syndrome and fibromyalgia (feye-broh-meye-AL-juh). Allergies also are common in people with IC/BPS. Learning about these conditions also might provide clues on the cause of IC/BPS.

How can I tell if I have IC/BPS?

No single test can tell if you have IC/BPS, which can make it hard to diagnose. Your doctor will ask you lots of questions about your symptoms. Your doctor also will need to rule out other health problems that may be causing your symptoms, such as:
Some tests used to help rule out other health problems that can cause bladder pain include:
  • Urine test. Your doctor will insert a catheter, which is a thin tube, to drain urine. Or you may be asked to give a urine sample using the "clean catch" method. For a clean catch, you will wash your genital area before collecting urine midstream in a sterile container. Your urine will be looked at under a microscope or sent to a lab to see if you have germs that cause UTIs or STIs.
  • Cystoscopy with or without bladder distention. Your doctor may use a cystoscope (SISS-tuh-skohp), which is a thin tube with a tiny camera, to see inside the bladder. Further testing may include slowly stretching the bladder, called bladder distention, by filling it with liquid. This helps the doctor get a better look inside the bladder. The doctor can look for signs of cancer, bladder stones, or other problems. It can show whether your bladder wall is swollen, thick, or stiff and can measure how much urine the bladder can hold. It can also find bleeding or ulcers in the bladder. This test is often done as an outpatient surgery.
  • Biopsy. A biopsy is when a tissue sample is removed and looked at under a microscope. Samples of the bladder and urethra may be removed during cystoscopy. A biopsy helps your doctor rule out bladder cancer.
Researchers are working on developing new tests to help diagnose IC/BPS.

Is there a cure for IC/BPS?

Doctors have not yet found a cure for IC/BPS. They cannot predict who will respond best to the different treatment options. Sometimes, symptoms may go away for no reason or after a change in diet or treatment. Even when symptoms do go away, they may return after days, weeks, months, or years.

How is IC/BPS treated?

There are treatments available to help ease the symptoms of IC/BPS. Doctors usually start with a conservative approach, and progress to other therapies as needed. Although no one treatment helps everyone, over time many women are able to find a treatment plan that helps them to feel better. Some of these include:
Self-help strategies. Some people with IC/BPS find relief with self-care methods, such as:
  • Bladder retraining — This helps the bladder hold more urine before signaling the urge to urinate.
  • Dietary changes
  • Wearing loose clothing
  • Quitting smoking
  • Reducing stress — Stress cannot cause IC/BPS, but it can trigger flare-ups.
  • Pelvic exercises — A doctor or physical therapist can teach you how to do these.
  • Low-impact physical activity, such as stretching and walking
Oral medicines. Several types of medicine might help with symptoms of IC/BPS. Over-the-counter pain relievers, such as aspirin and ibuprofen (eye-byoo-PROH-fuhn), might help with mild bladder pain. Talk to your doctor if you feel you need stronger pain medicine.
A prescription medicine called pentosan (PEN-tuh-san) polysulfate (pol-ee-SUHL-fayt) sodium (Elmiron) can help ease symptoms in about one-third of patients. Because Elmiron has not been tested in pregnant women, it's not recommended for use during pregnancy, except in severe cases. Doctors aren't sure how it works, but it may restore the inner surface of the bladder and protect the bladder wall from irritating substances. You may have to take this medicine for up to 6 months before you start to feel better. Other oral medicines for IC/BPS include:
  • Amitriptyline (a-mee-TRIP-tih-leen), an antidepressant that can help increase bladder capacity and block pain
  • Antihistamines
Bladder distention. The doctor slowly stretches the bladder by filling it with liquid. Doctors aren't sure why, but this procedure eases pain for some patients.
Bladder instillation (a bladder wash or bath).The bladder is filled with a liquid medicine that is held for different periods of time before being emptied. Treatments are given every week or 2 in about 6-or 8-week cycles. Some people are able to do this at home.
Nerve stimulation. Wires send mild electric pulses to the nerves that control the bladder. Scientists don't know exactly how nerve stimulation works, but it helps ease urgency and urinary frequency in some people.
Surgery. If other treatments have failed and the pain is disabling, surgery may be an option. Surgery may or may not ease symptoms.
Keep in mind, these treatments do not cure IC/BPS. But, you may find that these treatments help to ease your IC/BPS symptoms. Researchers continue to study new treatments for IC/BPS. Talk to your doctor to find out if taking part in a clinical trial might be right for you.

Can consuming certain foods and drinks bring on symptoms or make them worse?

Studies have not proven a link between diet and IC/BPS. Yet, some people find that that their symptoms begin or get worse after consuming certain foods or drinks, such as:
  • Alcohol
  • Tomatoes
  • Spices
  • Chocolate
  • Caffeinated and citrus drinks
  • High-acid foods
  • Artificial sweeteners
Keeping a food diary might reveal a link, if there is one, between certain foods or drinks and the onset of symptoms. Or, you can avoid foods or drinks you think might bring on your symptoms or make them worse. Then, you can start eating or drinking these products again one at a time to see if any affect your symptoms. Some people with IC/BPS find no link between symptoms and what they eat.
If you decide to avoid certain foods or drinks, make sure that your meals are still well-balanced and healthy.

Does IC/BPS affect pregnancy?

Doctors do not have much information about pregnancy and IC/BPS. IC/BPS is not thought to affect fertility or the health of the unborn baby. Some women find that their IC/BPS symptoms get better during pregnancy. Others find their symptoms get worse. If you are thinking about becoming pregnant, talk to your doctor about your IC/BPS and any medicines you might be using to treat IC/BPS or other conditions. Some medicines and treatments are not safe to use during pregnancy.

I just found out I have IC/BPS. What else can I do to cope?

Learn as much as you can about IC/BPS and play an active role in your treatment and self-care. Adopt a healthy lifestyle, so you can feel your best. Try to live life as normally as possible. Reach out to loved ones and trusted friends for support. Think about joining a support group for people with IC/BPS, which can help you to cope with symptoms and stress.

More information on interstitial cystitis/bladder pain syndrome (IC/BPS)

For more information about interstitial cystitis/bladder pain syndrome (IC/BPS), call at 800-994-9662 (TDD: 888-220-5446) or contact the following organizations:
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