Re: lupus/mary h

[Guest guest]

H,

I know your question was to Bert, so I hope you don't mind me butting in. I was diagnosed with lupus in 1996. I began with joint pain and swelling and fatigue. I was tested for rheumatoid arthritis because I have an uncle and cousins with it. The RF was negative but the ANA was positive so I was sent to a rheumatologist. At the time, I'd never even heard of lupus. I had problems with anemia off and on since I was a teen but just ignored it for the most part. As time went on, I developed the butterfly rash on my face, which was biopsied and came back with a 60% chance that the rash was caused by lupus. For me, the malar (or butterfly) rash does not itch, it is just varying degrees of red and looks as if a butterfly has landed right on your nose and it's wings are spread across your cheeks. I had a typical 'sunburn' rash that goes along with lupus but it was prior to my diagnosis and it was only years later that I realized it was a lupus sunburn rash - it is red, hot to the touch, and typically has small (sometimes itchy bumps). The first time I had this the rash stayed for over three weeks and it was still hot to the touch, just like a sunburn. My pcp said he had no clue what caused it. I've had the same time a few times since, but for the most part, the sun doesn't give me a lot of problems as long as I use sunscreen and common sense. I had also had problems with some rather strange rashes over the years. They weren't severe but were round, of varying size, red, and itchy. I just put cortisone on them and assumed I had skin allergies. Sometime after my diagnosis, I began having problems with mouth ulcers. It was not until July 2002 that I was tested for the antiphospholipid antibodies and found to test positive for the lupus anticoagulant. I had problems with a low WBC, RBC, hematocrit, hemoglobin, and platelets over the last several months. They thought it was because of lupus, but I think part of it may have been caused by the AIH since my last lab work revealed all of these back in the normal range.

Well, I've probably told you more than you wanted to know. For me, my lupus has remained relatively mild. The only medication I am currently on is plaquenil, which helps a great deal with the joint pain, fatigue, and rashes.

The reason I'm telling you how things have been for me is so you'll understand that not all the symptoms show up at once and often many don't develop until years after the first symptoms.

W

The info below is from the Lupus Foundation of America, Inc.

www.lupus.org

Lupus is a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood, and kidneys. The body's immune system normally 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 such as lupus, the immune system loses its ability to tell the difference between foreign substances (antigens) and its own cells and tissues. The immune system then makes antibodies directed against "self." These antibodies, called "auto-antibodies," react with the "self" antigens to form immune complexes. The immune complexes build up in the tissues and can cause inflammation, injury to tissues, and pain. For most people, lupus is a mild disease affecting only a few organs. For others, it may cause serious and even life-threatening problems. More than 16,000 Americans develop lupus each year. It is estimated that 500,000 to 1.5 million Americans have been diagnosed with lupus.

Symptoms

Achy joints (arthralgia)

95%

Fever more than 100 degrees F (38 degrees C)

90%

Arthritis (swollen joints)

90%

Prolonged or extreme fatigue

81%

Skin Rashes

74%

Anemia

71%

Kidney Involvement

50%

Pain in the chest on deep breathing (pleurisy)

45%

Butterfly-shaped rash across the cheeks and nose

42%

Sun or light sensitivity (photosensitivity)

30%

Hair loss

27%

Abnormal blood clotting problems

20%

Raynaud's phenomenon (fingers turning white and/or blue in the cold)

17%

Seizures

15%

Mouth or nose ulcers

12%

DIAGNOSIS: Because many lupus symptoms mimic other illnesses, are sometimes vague and may come and go, lupus can be difficult to diagnose. Diagnosis is usually made by a careful review of a person's entire medical history coupled with an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status. Currently, there is no single laboratory test that can determine whether a person has lupus or not. To assist the physician in the diagnosis of lupus, the American College of Rheumatology (ACR) in 1982 issued a list of 11 symptoms or signs that help distinguish lupus from other diseases (see Table 2). This has recently been revised. A person should have four or more of these symptoms to suspect lupus. The symptoms do not all have to occur at the same time.

Table 2The Eleven Criteria Used for the Diagnosis of Lupus

Criterion

Definition

Malar Rash

Rash over the cheeks

Discoid Rash

Red raised patches

Photosensitivity

Reaction to sunlight, resulting in the development of or increase in skin rash

Oral Ulcers

Ulcers in the nose or mouth, usually painless

Arthritis

Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)

Serositis

Pleuritis or pericarditis (inflammation of the lining of the lung or heart)

Renal Disorder

Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)

Neurologic Disorder

Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects

Hematologic Disorder

Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.

Antinuclear Antibody

Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.

Immunologic Disorder

Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).