IC Disease

As I had previously discussed in this Lupus series, there currently is not a cure for Lupus but the illness can be managed for most patients.  An early diagnosis and appropriate medical care can help control the disease and keep it from progressing.  Treating Lupus is different for each patient, as it needs to be tailored to the specific problems and symptoms that occur in each patient.  Before prescribing a treatment the physician will need to take into consideration:

• the severity of symptoms
• if there is organ involvement
• the patient’s age
• patient’s overall health
• patient’s lifestyle
• the risk of side effects

Here is what the Lupus Foundation of America says about treating Lupus:

For mild cases of lupus, when there is little disease activity and no major organ involved, treatment may be managed by a primary care doctor, such as a pediatrician, for children and teens, a family practitioner, or an internal medicine physician, for adults. However, when lupus is active and the person needs to be watched for complications, he or she should be under the care of a specialist, usually a rheumatologist (a physician specially trained to treat musculoskeletal and joint disease).

If lupus has caused damage to a particular organ, other specialists will be consulted as well: a dermatologist for cutaneous lupus (skin disease), a cardiologist for heart disease, a nephrologist for kidney disease, a neurologist for nervous system involvement, and others as the clinical findings require. An obstetrician or perinatologist who specializes in high risk pregnancies will also be needed when a woman with lupus is considering a pregnancy.

Physicians will use a variety of medications to treat Lupus. These medications are used to treat pain, inflammation, swelling, fever, and they help to suppress overactive immune systems. Dosages prescribed depend on the individual and combination of medications are typically used to help ease treatments.

There are four different types of Lupus.  These include:

• Discoid (cutaneous)
• Systemic
• Drug-induced
• Neonatal

Discoid Lupus
Discoid Lupus affects the skin.  People with this form of Lupus will have a rash that appears on the face, neck and/or scalp.  Discoid Lupus is diagnosed by biopsying the rash.  There is typically no organ involvement in Discoid Lupus and a few people with this form of illness can have a negative ANA blood test.   The majority will have a positive ANA but at a low level, however.

According to the LFA:

In approximately 10 percent of patients, discoid lupus can evolve into the systemic form of the disease, which can affect almost any organ or system of the body. This cannot be predicted or prevented. Treatment of discoid lupus will not prevent its progression to the systemic form. Individuals who progress to the systemic form probably had systemic lupus at the outset, with the discoid rash as their main symptom.

Systemic Lupus
This is a more severe form of Lupus and it can affect not only the skin and joints but also any organ system in the body. Some people may have a less severe case of Systemic Lupus where only the skin and joints are involved. For others with this form of the disease, there may be involvement in the skin, joints, lungs, kidneys, other organs, tissues and even blood. The LFA says:

Systemic lupus may include periods in which few, if any, symptoms are evident (”remission”) and other times when the disease becomes more active (”flare”). Most often when people mention “lupus,” they are referring to the systemic form of the disease.

Drug-induced Lupus
People can end up with drug-induced lupus after taking certain prescription medications. The symptoms of drug-induced lupus and systemic lupus are similar. The prescription medications most commonly linked with drug-induced lupus include:

• hydralazine - used to treat high blood pressure/hypertension
• procainamide - used to treat irregular heart rhythms

It is estimated that only about 4% of people who take these medications will develop the antibodies that suggest drug-induced lupus.  Out of those 4%, a very small percentage will develop full blown drug-induced lupus.  Symptoms will disappear once medication use is stopped.  This form of Lupus is more common in men.

Neonatal Lupus
This is a rare form of Lupus that is acquired through the passage of maternal autoantibodies and can affect the skin, heart and blood of the fetus and newborn. The LFA states:

It is associated with a rash that appears within the first several weeks of life and may persist for about six months before disappearing. Congenital heart block is much less common than the skin rash. Neonatal lupus is not systemic lupus.

Lupus is another chronic disease that there currently is not a cure for. While the illness will never go away (unless a cure is found), symptoms can go into remission and doctors can control the illness with medication. That doesn’t mean that the patient still doesn’t suffer, however.  If a patient is diagnosed early in the disease process this too can help physicians to keep the illness under control. 

If diagnosed early, treatments and medications can help reduce symptoms, reduce inflammation, control pain, and keep serious complications from occurring. According to the Lupus Foundation of America:

For mild cases of lupus, when there is little disease activity and no major organ involved, treatment may be managed by a primary care doctor, such as a pediatrician, for children and teens, a family practitioner, or an internal medicine physician, for adults. However, when lupus is active and the person needs to be watched for complications, he or she should be under the care of a specialist, usually a rheumatologist (a physician specially trained to treat musculoskeletal and joint disease).

If the disease has progressed to where other organs are involved, other specialists will need to be consulted such as a dermatologist for cutaneous lupus (skin disease), a cardiologist for heart disease, a nephrologist for kidney disease, a neurologist for nervous system involvement, and others if necessary.

Tests to Diagnose Lupus
When a doctor suspects a patient has Lupus, certain blood tests are done to see how the patient’s immune system is functioning. Physicians look for evidence of autoantibodies. It takes more than one blood test to diagnose Lupus. There is currently not just one test for Lupus. The tests usually run when Lupus is suspected include:

• Sedimentation rate (ESR) , also reffered to as the “SED” rate, and C-reactive protein (CRP) binding.
• Routine blood tests that can reveal if the patient has anemia, low platelet and low white blood cell counts.
• Serum protein electrophoresis which may reveal increased gammaglobulin and decreased albumin.
• Chemistry panels that can tell if there is kidney involvement, liver function abnormalities, and increased muscle enzymes.

According to the LFA, if Lupus is suspected these tests are also run:

Anti-nuclear antibody test (ANA) to determine if autoantibodies to cell nuclei are present in the blood.
Anti-DNA antibody test to determine if there are antibodies to the genetic material in the cell.
Anti-Sm antibody test to determine if there are antibodies to Sm, which is a ribonucleoprotein found in the cell nucleus.
Serum (blood) complement test to examine the total level of a group of proteins which can be consumed in immune reactions.
Complement proteins C3 and C4 test to examine specific levels.

In Part 1 of Illnesses Related to IC:  Lupus I gave a brief overview of what Lupus is.  Today I would like to go over the symptoms of the illness.

Lupus Symptoms
With Lupus, most people experience symptoms in only a few organs although the illness can affect any part of the body. Below are the most common symptoms of Lupus with the percentages of those affected by each afterward (thanks to the Lupus Foundation of America):

• Pain in the joints - achy (95%)
• Fever (over 100 degrees) (90%)
• Arthritis and swollen joints (90%)
• Extreme and lasting fatigue (81%)
• Skin rashes (74%)
• Anemia (71%)
• Kidney problems or kidney involvement (50%)
• Pleurisy (Pain in the chest on deep breathing) (45%)
• Butterfly-shaped rash across the cheeks and nose (42%)
• Sun or light sensitivity (30%)
• Hair loss (27%)
• Abnormal blood clotting (20%)
• Raynaud’s phenomenon - this is when the fingers turn white and/or blue in the cold (17%)
• Seizures (15%)
• Mouth or nose ulcers (12%)

It is recommended by the LFA that anyone who has several of these symptoms to see your physician immediately.

The last illness related to IC that I haven’t covered yet is Lupus. Lupus is an autoimmune disease that can affect different parts of the body. This may include the skin, joints, heart, lungs, blood, kidneys and brain. According to the Lupus Foundation of America:

Normally the body’s immune system makes proteins called antibodies, to protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens. In an autoimmune disorder like lupus, the immune system cannot tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against itself. These antibodies — called “auto-antibodies” (auto means ’self’) — cause inflammation, pain and damage in various parts of the body.

Inflammation is considered to be the main characteristic of Lupus that includes redness, heat, swelling, pain and loss of function. In Lupus, the inflammation can occur either on the inside of the body, the outside, or both in some cases.

For the majority of people with Lupus, the illness is mild and may only affect a few organs. But for the remainder of those with Lupus, it can be much more serious, even deadly. It is estimated that approximately 16,000 people develop Lupus each year.

It is estimated that there are approximately 1.5 - 2 million people who have Lupus of some form but there may be many more undiagnosed. Lupus affects mainly women. About 90% of all Lupus patients are female and symptoms and diagnosis usually occur anywhere from the age of 15 to 45.

Part 2 will be Lupus symptoms.

If you talk to someone with Interstitial Cystitis, you will probably find that the patient has more than one chronic condition going on.  They don’t have just IC Disease.  I was diagnosed first with ME/CFS (Chronic Fatigue Syndrome - ME/CFS is the new name) 18 years ago; later it was an IBS (Irritable Bowel Syndrome) diagnosis; about 14 years later I was diagnosed with both Fibromyalgia and the next month with Interstitial Cystitis.  My urologist told me that approximately 25% of his IC patients also have Fibromyalgia.

There are five illnesses that are related to Interstitial Cystitis and are commonly found in IC patients.  How many illnesses/conditions the IC patient has is an individual thing.  No two people are alike with IC Disease.  The five common illnesses/conditions related to IC include:

• ME/CFS (Chronic Fatigue Syndrome)
• Fibromyalgia (FM)
• Irritable Bowel Syndrome (IBS)
• Endometriosis
• Lupus

Again, I am going to do another series and I will break down the related illnesses one by one starting tomorrow.