Does anyone know much about Lupus?

. Immune Complex-mediated autoimmune disease - Systemic Lupus Erythematosus (SLE)-"Red Wolf"

1. General

a. Chronic, systemic, inflammatory; autoantibodies have specificity for nuclear structures (especially double-stranded DNA)

b. Pathogenesis - circulating immune complexes are filtered out of the blood in the kidneys and get trapped against the basement membranes of the glomeruli; others get trapped in arteriolar walls and joint synovial spaces; these complexes activate C' and attract granulocytes, which leads to inflammation and tissue damage

c. Females to males = 4:1; highest incidence in childbearing years (10 times more common in women of childbearing age than in men); more common in nonwhites (esp. blacks) than whites

d. 5-year survival is 80-90%

2. Clinical Features

a. Signs and Symptoms

*General-fever, weight loss, malaise, lethargy, hypercoagulation with anti-phospholipid antibodies

*Joints and muscles-polyarthralgia or arthritis (90%); symmetric, no bony erosions or severe deformity; avascular necrosis of bone is common (may be because of steroids); myalgias also common

*Skin-erythematous rash (butterfly) is most common (on areas exposed to light); may cause scarring, atrophy and pigmentation changes; many other skin problems are seen; the sensitivity to ultraviolet irradiation may be due to its release of DNA from skin, which in turn increases the level of circulating immune complexes and hence the symptoms

*Kidneys -75% have nephritis at autopsy; severity is extremely variable; hypertension is common

*Heart - endocarditis

*Nervous system -psychosis and depression are the most common manifestations; also "stocking glove" peripheral neuropathy

*Vascular system -small vessel vasculitis commonly occurs in active SLE

*G.I.-pain, diarrhea, bleeding ulceration, pancreatitis and cholecystitis (gall bladder inflammation)

b. Lab Findings

*80% have a normochromic/normocytic anemia

*Leukopenia, thrombocytopenia

*80% have increased globulins

*LE cell (neutrophil with phagocytosed nucleus) - reflects the presence of anti-DNA

*The absence of ANAs (Antinuclear Antibodies) is strong evidence against diagnosis of SLE; high titers of anti-ds-DNA antibodies ("native") are essentially seen only in SLE; anti-RBC, anti-platelet, anti-phospholipid, anti-cytoplasmic and anti-IgG (RF) are also seen

c. Treatment

*No treatment may be necessary

*If arthritis is the major symptom, high-dose aspirin (or other NSAID) may suffice

*If skin or mucosa is involved, antimalarial and topical corticosteroids are beneficial

*In severe SLE, systemic steroids can suppress disease and prolong life

*If patient doesn't respond to steroids, or side effects develop, cytotoxic agents such as cyclophosphamide, chlorambucil or azathioprine are indicated

Wow, thanks Kolt19! That's a lot of great information! I don't have SLE, but I'm told that I have a very slow progressing scleroderma. I was recently tested for SLE, but fortunately, that came back negative. :)

I do hope in the coming years that we will find some advancements on autoimmune disorders. We can only hope.

Sorry to hear about your friend.

Hugs to you and your friend.

What's the long term prognosis? The Internet doesn't give you any numbers.

Thanks for that reply Kolt19!!! That helped a lot!!!

There are several kinds of lupus. I have lupus vs mixed connective tissue disease for 15 years. I had a hip replacement two years ago and will get one in Sept. You can live a very long and healthy life, if you take care of yourself. I have two girls one is 12yrs and the other is 19months. I am going back to school in January and I want to become a RN Nurse.

My best advice for your friend is to find a good rheumatalogist and to make sure she takes care of herself. Make sure she takes her medicine and keep up with her treatments. There is really no way of saying how long your going to live. Every lupus case is different, it depends on the person and the severity of the lupus. It is extremely important that she finds a good medical plan that works for her.

Try searching under hepatic and splenic infarction that is caused by systemic lupus erythematosus. I am not a nurse so I don't have access to many of the med sites ....sounds to me as if it may have some connection to the arteries being affected by the lupus, and then the liver and spleen being affected by impaired circulation? I am guessing. God Bless!

My great aunt was diagnosed when she was in her late 20's.....she's now 76. She has managed it quite well with diet, exercise, and medication, but it's catching up to her now. She was hospitalized twice last year for a horrific case of osteomyelitis, then got an infection from her PICC, then her lupus flared up, landing her back in the hospital. And after all that was remedied, she found out she has stage III colon cancer that has spread to the mesentery and is now going through her radiation. Her oncologist stated that her tumor was very unusual in that it grew VERY rapidly, it was an unusual shape and size, etc. The oncologist believes that her lupus probably contributed to that.

It was just ruled for me (my ANA came back negative; my RA factor came back elevated) and I have to go through some more blood work and xrays before my rheumatologist will make a definititive dx of RA. I will say that although the chance I have RA is very high, I was glad to hear my ANA came back negative. I have seen the hard times my great aunt has gone through when her lupus has flared up in the past and I don't want to have to go through that. Of course, RA obviously has it's downside as well.

Melanie = )

My father was diagnosed with lupus in the mid seventies and lived until 2001. He had renal failure as a result, but recieved a transplant and lived for 10 years after that. The puzzling thing about lupus is how differently it affects every person. It can be very mild to very severe. Some people need no treatment, some need extensive treatment. Most people have pretty good outcomes if they comply with treatment and stay on top of it. Good luck to you both.

i was dx with lupus, the systemic type, almost five years ago, shortly after the birth of my first daughter. i had been complaining of odd rashes, overwhelming fatigue, mental "fuzziness" and other vague sx for years. i was blown off by numerous docs, and of course, while i was pregnant, it was attributed to the pregnancy. eventually, it was my derm who figured it out and ordered some labs and told me to go see a rheumatologist.

it sounds like your g/f has the systemic type as well and has some very devastating complications from it. i hope she is getting some good care from a rheumatologist as well as her internist.

i have been pretty lucky so far, i had two episodes of lupus nephritis, but other than that, just mild problems. i have a host of other medical problems as well that i won't go into here, but i know i had terrible pain when during the first few years of my dx. i used to take bextra before they took it off the market, that was the best drug for me to manage the pain.

a lot of the information out there is outdated. there are new definitions to dx the disease, but i do not know them off the top of my head. a lot of people place great emphasis on having a positive ANA; this is not necessary for a dx. there is a good book out there called "the lupus handbook" that is written by a specialist and goes into great detail. the prognosis largely depends on the organs affected (lupus is most damaging to the kidneys and heart, but affects every organ in the body). hugs to you and your girlfriend! :kiss tell her to rest, rest, rest and take good care of herself!

dear rehab nurse

were u a nurse b4 u was diagnosed with lupus? I also have lupus and i want to go into nursing in spring 06

dear rehab nurse

were u a nurse b4 u was diagnosed with lupus? I also have lupus and i want to go into nursing in spring 06

yes, i was a nurse for 5 years before i was diagnosed with lupus. though, i had the symptoms at that time, just not a diagnosis. is your case mild? or do you have organ involvement?

Dear Rehab Nurse

I have lupus for 15yrs. My Case is moderate. I have no organ involments. All i've had is a right hip replacement and i'm i'm going 4 the left in sept. I have AVN.