I almost died last week my kidney's were shutting down

[youbroughtheryouRiker 2]

Ouch. Forgive me if I'm wrong, but that means no children ever, right?

 

Dang DW, I feel so bad for you. Wish I could say something more meaningful than this. :P :P

[Itchygomba69 0]

no I'm a man and I Don't have to carry the child, but their is a small risk but not as bad as if I was a chick

[youbroughtheryouRiker 2]

ok. Still though. Sad man.

[Kor37 9]

Lupus!... :P ....Sheesh Joe! I feel so bad for you. I really don't know what to say. You're a really good guy and don't deserve this. Please let us know what the doctor says and your chances for recovery. I'll certainly keep you in my prayers.

[Kor37 9]

» Click to show Spoiler - click again to hide... «

1. What is lupus?

 

Lupus is a chronic (long-lasting) autoimmune disease in which the immune system, for unknown reasons, becomes hyperactive and attacks normal tissue. This attack results in inflammation and brings about symptoms.

 

What does autoimmune mean?

Literally it means immune activity directed against the self. The immune system fights the body itself (Auto=self). In autoimmune diseases, the immune system makes a mistake and reacts to the body's own tissues.

 

What is inflammation?

Literally it means setting on fire. It is a protective process our body uses when tissues are injured. Inflammation helps to eliminate a foreign body or organism (virus, bacteria) and prevent further injury. Signs of inflammation include; swelling, redness, pain and warmth. If the signs of inflammation are long lasting, as they can be in lupus, then damage to the tissues can occur and normal function is impaired. This is why the treatment of lupus is aimed at reducing the inflammation. Reference: see Facts & Overview, What is Lupus?

 

What happens in autoimmune diseases like lupus?

The immune system is designed to protect and defend the body from foreign intruders (bacteria, viruses). You can think of it like a security system for your body. It contains several different types of cells, some of which function like "security guards" and are constantly on patrol looking for any foreign invaders. When they spot one, they take action, and eliminate the intruder. In lupus, for some reason and we don't know why, the immune system loses its ability to tell the difference between a foreign intruder and a person's own normal tissues and cells. So, in essence, the "Security Guards" make a mistake, and they mistakenly identify the person's own normal cells as foreign (antigens), and then take action to eliminate them. Part of their response is to bring antibodies to the site that then attach to antigens (anything that the immune system recognizes as non-self or foreign) and form immune complexes. These immune complexes help to set in motion a series of events that result in inflammation at the site. These immune complexes may travel through the circulation (blood) and lodge in distant tissues and cause inflammation there.

 

Where did the name come from?

Lupus is the Latin word for wolf. The term has been associated with the disease since the 10th century, though the reasons are unclear. Erythematosus means redness. It is speculated that the name was given to describe the skin lesions (sores), which typically are red and perhaps at that time in history were thought to resemble the bite of a wolf. Today we know that not everyone with lupus has rashes or skin lesions, and those who do would not say their rashes look anything like a wolf bite.

 

Who gets lupus?

Lupus can occur at any age, and in either sex. Nine out of ten people with lupus are women. During the childbearing years (ages 15-44) lupus strikes women 10-15 times more frequently than men.

 

People of all races can have lupus; however, African American women have a three times higher incidence (number of new cases) and mortality than Caucasian women. They tend to develop the disease at a younger age and to develop more serious complications. Lupus is also more common in women of Hispanic, Asian, and Native American descent.

 

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has developed a strategic plan for reducing health disparities. Lupus is included as an area of research focus. Further information on disparities in lupus and the strategic plan is available at: http://www.niams.nih.gov/an/stratplan/stratplan.htm

 

What are the symptoms of lupus? Symptoms of lupus vary widely depending on the individual case and the form of lupus present. Most people with lupus do not experience all of these symptoms. The list only serves to alert people to clues that might indicate the presence of lupus in an undiagnosed person.

 

Achy or swollen joints

Persistent fever over 100 degrees

Prolonged, extreme fatigue

Skin rashes, including a butterfly shaped rash across the cheeks and nose

Pain in the chest on deep breathing

Anemia

Excessive protein in the urine

Sensitivity to sun or ultraviolet light

Hair loss

Abnormal blood clotting problems

Fingers turning white and/or blue in the cold

Seizures

Mouth or nose ulcers lasting longer than two weeks

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2. Are there different kinds of lupus?

There are four forms of lupus including:

Cutaneous lupus erythematosus affects the skin. There are many different types of cutaneous lupus including:

Chronic cutaneous LE (CCLE) which is sometimes called discoid.

Subacute cutaneous LE (SCLE), and

Acute cutaneous LE (ACLE).

See brochure: Skin Disease in Lupus

Systemic lupus erythematosus (SLE) attacks multiple systems in the body which may include: the skin, joints, lungs, blood, blood vessels, heart, kidneys, liver, brain and the nervous system.

See Facts & Overview: What is Lupus?

 

Drug-induced lupus may develop after taking certain prescription medications. Symptoms generally disappear, within weeks to months, after the drug is discontinued.

See brochure: Drug-Induced Lupus Erythematosus

 

Neonatal lupus, a fourth type, is a rare condition. It is not the same thing as SLE. See FAQ 39 - Research.

Resource: "Lupus and Pregnancy" by T. Flint Porter, MD, MPH and D. Ware Branch, MD. Lupus News, Vol. 20, No. 5, Winter 2000.

Reference: see Facts & Overview, Types of Lupus

 

Lupus in Overlap

The majority of people with lupus have lupus alone. Between five and thirty percent of people with lupus report having overlap symptoms characteristic of one or more connective tissue diseases. There are several well-recognized overlaps that may affect people with lupus including: lupus and rheumatoid arthritis (RA), lupus and myositis, lupus and systemic sclerosis (SSc or scleroderma), lupus and Sjogren's syndrome (SS).

Reference: see brochure, Lupus In 'Overlap' With Other Connective Tissue Diseases

 

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3. Is lupus contagious?

No, not even through sexual contact.

 

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4. Is lupus a fatal disease?

Lupus is not a universally fatal disease. In fact, today with close follow-up and treatment, 80-90% of the people with lupus can expect to live a normal life span. Lupus does vary in intensity and degree, however, and there are people who have a mild case, there are those who have a moderate case and there are some who have a severe case of lupus, which tends to be more difficult to treat and bring under control. For people who have a severe flare-up, there is a greater chance that their lupus may be life-threatening. We know that some people do die of this disease and because of that we have a tremendous amount of respect for the potential of this disease. However, the majority of people living with lupus today can expect to live a normal lifespan.

 

People frequently read in the literature that, 80-90% of people with lupus live for more than ten years. Unfortunately, this is often misinterpreted as- people with lupus live for only ten years. Let us clarify this.

 

It is important to understand that the "10 years" does not represent the number of years the person will live, but rather the number of years involved in the study. The studies followed patients with lupus from the time of diagnosis for a period of ten years. At the end of this research period they were able to conclude that 80-90% of the people enrolled were still alive. What this study did not look at is what happened in year 11, 12, 15, 20 and so on. We know there are many people who have been living with lupus for 15, 19, 25, 30 and 40 years. This is not a disease that is universally fatal to all. The majority of people with lupus today can expect to live a normal lifespan.

 

When people die of lupus, what do they usually die of?

Overwhelming infection and kidney failure are the two most common causes of death in people with lupus.

 

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5. Lupus and cancer Is lupus a form of cancer?

No, lupus is not a form of cancer. It is an autoimmune disease.

 

Are people with lupus more likely to develop cancers?

People with lupus are no more likely to develop cancer than are people in the general population. However, people who have received certain chemotherapy drugs do carry the added risk of developing cancer sometime later in life.

 

Are there any special considerations regarding treatment of cancer in people with lupus? Cancer can be treated in many ways; with surgery, radiation and/or chemotherapy. All people with lupus who have surgery for cancer, should be followed closely by their personal physician and/or the rheumatologist to evaluate the activity of their lupus throughout the course. For patients receiving steroid therapy and surgical procedures, their steroid dosage will have to be adjusted during the time just shortly before surgery and then tapered slowly over time after surgery. If a person is scheduled for surgery and they take non-steroidal anti-inflammatory drugs or aspirin, any of which may effect their clotting time, these medications will need to be stopped prior to surgery in order to minimize bleeding.

 

Chemotherapy usually doesn't present any particular problems and can in turn treat active lupus.

 

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6. Is lupus like AIDS?

No. In AIDS (Acquired Immune Deficiency Syndrome) the immune system is under active; it is deficient. In lupus the immune system is overactive, producing large quantities of antibodies. AIDS is contagious but lupus is not. The majority of people diagnosed with AIDS die from their disease whereas the majority of people with lupus can expect to live a normal lifespan.

 

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7. Lupus anticoagulant

 

I was just diagnosed with the lupus anticoagulant. Does this mean I have systemic lupus?

The lupus anticoagulant is classified as a type of antiphospholipid antibody that was first detected in people with lupus. It was later learned that many people who do not have lupus, also produce these antibodies. In fact, according to most studies, greater than 50% of the people who have antiphospolipid antibodies, DO NOT have lupus. So, just because a person has the lupus anticoagulant antibodies does not necessarily mean that they have or will develop systemic lupus.

 

There is a syndrome called the "Primary" Antiphospholipid Syndrome (PAPS). This term is used to describe people who do not have any signs or symptoms of SLE but produce antiphospholipid antibodies such as the lupus anticoagulant and/or anti-cardiolipin antibodies and experience problems with blood clots, miscarriages, or thrombocytopenia (low platelets). People with PAPS do not have lupus.

References: see brochures, Blood Disorders in Lupus, and Antiphospholipid Antibodies and Systemic Lupus Erythematosus

 

Is it possible to have antiphospholipid antibodies and not have systemic lupus?

Yes. Although these antibodies were first discovered in people who had lupus, it was later learned there are many people who produce these antibodies who do not have systemic lupus.

References: see brochures, Blood Disorders in Lupus, and Antiphospholipid Antibodies and Systemic Lupus Erythematosus

 

Is it possible to have antiphospholipid antibodies and not have symptoms related to them, i.e. blood clots, miscarriages or low platelets?

Yes. In fact, most people with these antibodies DO NOT and will not have symptoms related to them.

 

Antiphospholipid Antibody Syndrome Foundation website

 

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8. Lupus and multiple sclerosis

 

I was diagnosed with MS 3 years ago and now my doctor thinks I may have lupus. Is there a connection between MS and lupus?

Multiple Sclerosis and lupus are both autoimmune diseases. They are diagnosed and treated in very different ways. There is no direct connection between the two, however, lupus, known as a great imposter, can sometimes mimic or imitate the symptoms of MS.

Reference: see brochure, Systemic Lupus and the Nervous System

 

My MRI from 3 years ago showed plaques. Is there anything on the MRI of people with lupus of the nervous system that is diagnostic for CNS lupus?

Diagnosis of CNS lupus is difficult as there is not one specific diagnostic test to detect nervous system involvement in lupus. The abnormalities seen on the MRI scans are not specific for systemic lupus. In other words, they could be due to a number of things. The findings on these specialized tests and sometimes other tests such as a brain wave test (electroencephalogram, EEG) and a spinal tap have to be considered along with clinical and laboratory findings in establishing a diagnosis of CNS lupus. Reference: see brochure, Systemic Lupus and the Nervous System

 

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9. My child has lupus. What is the prognosis?

The prognosis for children and adolescents with systemic lupus has improved dramatically over the past twenty years. With modern therapy, children do nearly as well as adults.

References: see brochure, Childhood Lupus and Contact the LFA for articles on childhood lupus.

 

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LUPUS OF THE SKIN

 

10. What are the symptoms of cutaneous lupus?

The symptoms of cutaneous lupus may include a variety of different looking skin rashes, photosensitivity (where exposure to ultra-violet light triggers a rash), and sometimes ulcers on the inside of the nose or mouth.

Reference: see brochure, Skin Disease and Lupus

 

What do the rashes look like?

There are a variety of ways that cutaneous lupus rashes can appear. The distinctive rash is called the "butterfly rash," which is a rash that extends across the cheeks of the face and the bridge of the nose. It can be flat or raised; it can be bright red or it can be just a mild blushing, light pink coloration to the skin. It appears on the face in a pattern that looks like a butterfly; the wings are beneath both eyes and the body of the butterfly covers the bridge of the nose. Here is one example of what a butterfly rash may look like. (Photo source: Dept. of Dermatology, University of Iowa)

 

 

Another classic rash found in cutaneous lupus is the discoid rash. This rash is coin-shaped or oval in shape, like a disk and it is seen on areas of the skin that are exposed to sunlight. Discoid lesions (sores) tend to be red and raised and become scaly. When they heal they can leave behind a scar. These rashes can also result in a change in coloring of the skin, making the area around the lesion either lighter or darker in color. These discoid lesions may appear on the scalp; on the face in a butterfly distribution; or, as mentioned earlier, in areas where the skin receives sun exposure, especially, for example, the V of the neck. Discoid lupus erythematosus (LE) lesions are usually painless and typically do not itch. Here is one example of what a discoid rash may look like. (Photo source: Dermatology Information System, Dermis.net)

 

 

Chronic cutaneous lupus may also appear in different forms including:

 

verrucous (wart-like) discoid LE

lupus tumidus - elevated areas of red skin with no scale or scarring

lupus profundus - discoid skin lesions in conjunction with panniculitis

palmar-plantar erosive discoid LE - discoid lesions on the hands and feet

Another type of lupus skin rash is classified as the subacute cutaneous lesions. These are lesions characterized by redness. They are also coin-shaped, very photosensitive and they get worse when exposed to ultra-violet light. These are lesions that do not leave behind scars, and can appear over large areas of the body. People who have subacute cutaneous lupus erythematosus (SCLE-a subset of cutaneous lupus) may experience systemic symptoms such as:

muscle and joint pain,

fever and

general discomfort.

Serious kidney or nervous system problems are rare.

These are just a few examples of what cutaneous lupus rashes may look like. Because the appearance of skin rashes in lupus can be quite variable, it can be difficult to diagnose just by looking at the lesion, and therefore other tests may be necessary.

Reference: "The Skin In Lupus," by Richard D. Sontheimer, M.D. & Thomas T. Provost, M.D. Lupus News, Volume 18, Number 2, Spring 1998.

 

How is cutaneous lupus diagnosed?

Cutaneous lupus, because of the great deal of variability in the way that the skin rashes may appear, can be quite difficult to diagnose. However, a skin biopsy may be performed and this may be diagnostic.

 

What kind of Doctor specializes in cutaneous lupus?

A dermatologist specializes in diseases of the skin, hair and nails. Cutaneous lupus is one of hundreds of diseases that involve these areas.

 

How is cutaneous lupus treated?

Treatment of cutaneous lupus may include corticosteroid creams or ointments applied to the rash or lesions. If the lesion does not respond to cream or ointment, the doctor may prescribe injections of corticosteroids directly into the lesion. If a person has particularly widespread lesions, oral corticosteroid medications may be prescribed or the doctor may prescribe anti-malarial medications such as Plaquenil (hydroxychloroquine).

 

In addition to these medications, sunscreens are an important part of the prevention of photosensitivity (where skin exposed to ultra-violet light reacts by developing a rash) reactions that may occur with cutaneous lupus lesions.

Reference: see brochure: Skin Disease in Lupus.

 

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11. How is cutaneous lupus different from systemic lupus?

Cutaneous lupus is confined to the skin, whereas systemic lupus may involve not only the skin but any of the other organ systems in the body.

 

Can cutaneous lupus turn into systemic lupus?

In approximately 10% of the cases of cutaneous lupus, it evolves and develops into systemic lupus. However, this can't be predicted or prevented from happening.

References: see brochures, Skin Disease in Lupus, and What is Lupus?

 

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12. I have hair loss due to several scars on my scalp. All are about the size of silver dollars. Is there anything to help this kind of hair loss?

If biopsy results indicate advanced scarring on the scalp, then there is little chance of bringing back significant amounts of hair. If, on the other hand, scarring is not prevalent, then treatment with corticosteroid and/or antimalarial drugs may be successful in getting the hair to return. When the disease is inactive, and scarring is not present hair usually grows back.

Reference: see brochure: Skin Disease in Lupus

 

Will the drugs used to treat baldness help the hair loss due to lupus?

Suppressing the disease with medication helps hair to re-grow.

 

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13. Is there anything that can be done to cover the lesions (sores) that show-up on my face?

Yes. There are make-up products available commercially which may be helpful in this situation. Fallene's Total Block® SPF 60 Foundation can be used as a make-up as well as a sun block.

References:

Covermark Cosmetics

157 Veterans Drive, Suite D

Northvale, NJ 07647

1-800-524-1120

www.covermarkusa.com/

 

Total Block

Fallene, Ltd.

677 West De Kalb Pike

King of Prussia, PA 19406

1-800-332-5536

http://www.totalblock.com/

 

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14. Can lupus cause either hives or a sensation of burning in the skin?

Lupus may cause hives. Itching can also occur but this is not a common finding. The sensation of itching is due to irritation of nerve fibers in the skin. If the irritation is more intense, it may cause a burning sensation.

 

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15. What is photosensitivity and what are photosensitivity reactions?

Photosensitivity is sensitivity to the UV (ultra-violet) rays from the sunlight and other UV light sources. Photosensitivity reactions typically include a rash, but may also trigger fever, fatigue, joint pain and other symptoms of SLE. In some cases, sun exposure has resulted in the onset of kidney disease. Reference: see brochure: Skin Disease in Lupus

 

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DRUG-INDUCED LUPUS

 

16. What is the difference between drug-induced lupus (DIL) and systemic lupus?

Systemic lupus is irreversible, whereas drug-induced lupus generally is reversible when the drug is discontinued. The symptoms of drug-induced lupus generally DO NOT include kidney involvement or central nervous system involvement

 

What drugs are most commonly associated with DIL?

There is just a short list of medications for which there is DEFINITE PROOF of an association with drug-induced lupus. The list includes 5 medications.

 

Procainamide (pro-can-a-mide) brand names Procan or Pronestyl used for heart rhythm abnormalities

Hydralazine (hi-dral-a-zine) brand name Apresoline or Apresazide used for high blood pressure

Isoniazid (i-so-nye-a-zid) brand name INH used for tuberculosis

Quinidine (quin-i-dean) used for heart rhythm abnormalities

Phenytoin, brand name Dilantin used for convulsive disorders (seizures).

 

Are there other drugs that might cause DIL?

The overwhelming majority of cases of DIL are due to one of the 5 drugs mentioned earlier. There are other drugs, which might POSSIBLY be associated, but there is not yet definite proof of an association between them and drug-induced lupus. Check with your doctor to see if you are on any medication that might possibly explain your symptoms.

 

Should people diagnosed with SLE or Cutaneous lupus avoid taking the drugs associated with drug-induced Lupus?

Most of the drugs associated with DIL can be safely used in people with SLE or cutaneous lupus if there are no suitable alternatives.

 

How soon after taking the drug do the symptoms appear?

Drug-induced lupus requires months to years of frequent exposure to a drug before symptoms appear.

 

How soon after discontinuing the drug will the symptoms go away?

It varies from days, to weeks, to months. Usually symptoms fade after six months. The ANA may remain positive for years.

Reference: see brochure: Drug-Induced Lupus Erythematosus

 

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CAUSE

 

17. What causes lupus?

The exact cause of lupus is unknown. It is likely to be due to a combination of factors. For example, a person's genetic make-up and exposure to certain unknown trigger factors may provide the right environment in which lupus can develop.

Reference: see Facts & Overview, What is Lupus?

 

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18. Is it hereditary?

We suspect (but do not have scientific proof) that people inherit something from their parents that predisposes them to develop lupus. They are not necessarily pre-destined to develop lupus, but they may be more susceptible. At the present time, there are no genetic tests to determine who is susceptible and who is not.

Reference: see Facts & Overview, What is Lupus?

 

This is just so everyone can understand what Joe is going through......

[Itchygomba69 0]

thanks dude Its actually better then having Diabeties, its more comtrolable

Edited September 9, 2006 by dragonwrangler95

[Itchygomba69 0]

I was in the hospiral today, it felt like I was having a heart attack, but my blood pressure just got a little out of wack

[Kor37 9]

Glad to see you made out ok.