View Full Version : Lupus Nephritis? confused and v.worried!
08-11-2004, 06:17 AM
Hello, I'm new to this board and I'm waiting for a diagnosis for Lupus Nephritis and wondered if anyone could offer advice. :)
I'm having more tests done to see if I have lupus nephritis as a recent biopsy was 'unclear'. They first thought it was post infectious after a bad illness at xmas, but when i didn't respond to steroids they decided to take another look at my biopsy.
Felt tired for a few years now, but burnt on a sunbed in Jan just beore i got blood in my urine and achy joints and tiredness but carried on as normal. I've never really felt very poorly, I was still coming into work. I mentioned this to the nephrologist who dismissed the sunbed as the cause and asked about my medical history (regular strep throat, teenage glandular fever, frevent UTI's)
My ANA came back negative, so they are running more tests. I've just had a load of blood taken and I'm really worried. Apart from being a bit tired I've felt fine all year and this is all a big shock! I'm having a lot of trouble coming to terms with it.
The main joint pain was in my neck and the base of my spine, but i spend 8hrs a day at a computer and these go when I'm not on the computer.
I have no other strong signs of Lupus apart from the kidney biospy - which is yet to be proven. Is it possible to have a case that effects just your kidneys? Also, is it likely that the sunbed caused it? Does this even sound like Lupus? v.worried at the moment. Many thanks for any help/advice.
08-14-2004, 06:11 AM
I was reading your post and I am sorry to hear about your condition. It is very difficult to come to terms with any of this Lupus stuff. I was recently dx'd myself with SLE. Although, I don't have any of the organ involvement or symptoms, it is very scary to me.
When will you be recieving your lab results? I will put in a prayer for you, I can imagine that the wait is killing you. KEEP BUSY as much as you can handle. I don't know what sunbed is exactly, but I too always suffered from throat infections, back aches, etx. It could just be something simple like that.
Good luck and I hope to hear from you soon!
08-15-2004, 01:23 PM
Hi Bungle - Welcome to our forum. I think we have all suffered through the "waiting" process when being tested for our disease. That, alone, can cause us a lot of stress and worry which can, in turn, exacerbate our symptoms. I'd like to tell you to try not to worry, but that makes no sense whatsoever - I know. So, what I can do is to provide you with as much information about Lupus Nephritis as I can. I hope that it is helpful to you!
Lupus nephritis is an inflammation of the kidney caused by systemic lupus erythematosus (SLE), a disease of the immune system. SLE causes harm to the skin, joints, kidneys, and brain.
The causes of SLE are unknown. Many factors may play a role, including
gender (SLE is more common in women than men) heredity (a gene passed down by a parent) infections,viruses, environmental causes
Some people with SLE may have no symptoms of kidney disease. However, lupus nephritis may cause weight gain, high blood pressure, dark urine, or swelling around the eyes, legs, ankles, or fingers.
Diagnosis may require urine and blood tests and x rays of the kidneys as well as a kidney biopsy. Treatment depends on the symptoms. Medicines can decrease swelling, lower blood pressure, and decrease inflammation by suppressing the immune system. Patients may need to limit protein, sodium, and potassium intake in their diet.
Lupus nephritis is a glomerular disease.
Lupus nephritis is one complication of systemic lupus erythematosus(SLE). It is related to the autoimmune process of lupus, where the immune system produces antibodies(antinuclear antibodyand others) against body components. Complexes of these antibodies and complementaccumulate in the kidneys and result in an inflammatory response.
Lupus causes various disorders of the internal structures of the kidney, including interstitial nephritis, mesangial GN, membranous GN, membranoproliferative GN, diffuse proliferative GN, and others.
It often causes nephrotic syndrome(excessive protein excretion) and may progress rapidly to renal failure. There is progressive azotemia(the accumulation of nitrogenous waste products in the bloodstream) and urinary abnormalities including protein and blood in the urine.
Lupus nephritis affects approximately 3 out of 10,000 people. Systemic lupus erythematosus is most common in women, especially those 20 to 40 years old. It has a familial tendency, with a higher incidencein blacks. It may be related to other autoimmune disordersincluding rheumatoid arthritisand scleroderma. It has been known to be triggered by pregnancy in some cases.
In persons with SLE, about half will have some form or degree of kidney involvement.
Blood in the urine
Foamy appearance to urine
Swellingof any area of the body
Elevated blood pressure
Symptoms of SLEmay include the following: Joint pain
Rashcommonly on the face but may occur on other areas
characteristic "butterfly" distribution
Chest pain, sharp and stabbing
Sun sensitivity fevermay develop after exposure to sun
rash may develop after exposure to sun
Neurologic changes seizures
dementia or psychosis
Signs and tests:
Examination indicates decreased kidney functioning with edemaand may indicate renal failure. Blood pressuremay be high. Abnormal sounds may be heard on auscultationof the heart and lungs, indicating fluid overload. Lupus nephritis is usually discovered during investigation of the causes of reduced kidney function. Fewer than one-half have other symptoms of systemic lupus erythematosusat the time of diagnosis of lupus nephritis.
A urinalysisis abnormal with protein, casts, and red blood cells present in the urine.An ANAtiter is high. Syphilistests may be falsely positive.
BUNand creatininemay be used to assess kidney functioning.
A lupus erythematosus(LE) cell test is positive.
A kidney biopsyis indicated, not to diagnose lupus nephritis, but to determine what treatment is appropriate for the renalcomponent of SLE.
A urine immunoglobulin light chainis elevated.
This disease may also alter the results of the following tests: Complement component 3 Complement
The goal of treatment is improvement of kidney function.
Corticosteroids or other immunosuppressive medications are often effective in reducing symptoms. Whether high doses of corticosteroids or immunosuppressives are likely to be beneficial depends on the precise findings on kidney biopsy.
Dialysismay be necessary to control symptoms of acuteor chronic renal failure. Renal failuremay be severe enough to require dialysis even if no other symptoms of SLEare present.
A kidney transplantmay be recommended to treat kidney failureresulting from lupus nephritis.
The outcome varies. It is usually worse with diffuse proliferative lupus nephritis (one specific form of the disorder). As with SLE, the course is variable, with exacerbations (acuteepisodes) and remissions (symptom-free periods).
Some cases of lupus nephritis may progress to chronic renal failure.
Over 80% of people with lupus nephritis severe enough to require dialysisor transplantation will survive for more than 5 years after treatment. Although lupus nephritis may recur in a transplanted kidney, it rarely leads to end stage renal disease. People with active lupus should not undergo transplantation.
Acute renal failure
Chronic renal failure
End-stage renal disease
Keep us informed..best of Luck!
Peace and Blessings
08-16-2004, 08:15 AM
Thanks for the kind words and the information
I should hopefully find out what is going on this week and i will let you know how i get on.
08-16-2004, 09:35 AM
Hi, there. I have Type 4 Lupus Nephritis and have been on CellCept. Prednisone, and BP meds for about 9 months now. Things are better than they were with my kidney function. Yes, it is possible to have "renally exclusive" SLE. A Nephrologist in Seattle told me he estimated about 10% of SLE patients have this - pretty rare. Blood in your urine can cause anemia, which causes fatigue, and they'll want to work on your protein leak, too. I see my Nephrologist about every two weeks - much more often than my Rheumatologist - he keeps close tabs on me.
Good luck with everything. My SLE dx was a surprise to me, my primary doc kept telling me that I just had iron deficiency anemia! Arghh! Could have caught this sooner!
08-26-2004, 11:02 PM
I've had lupus SLE and lupus nephritis since 1992.
in 2002 it got REALLY bad, with my legs and feet to swollen to wear shoes and the kidney docs predicting i'd be getting dialysis/ transplant within 5 years. long story short, I've done the prednisone, quit chemo after 2 treatments 9it made me extremely sick and i was on a TON of prednisone and 8 otherr drugs anyhow- personal decision)- did a bunch of alternative medicine and now I'm fine. no more compresison hose, legs aren't swollen.
i am on lisinopril (BP med), drink water and have to rest a lot. 10 hours sleep a night minimum, and pacing myself with activities, but i am nto chained to a dialysis machine and i feel OK.
still getting regular blood tests so it doesn't get out of control again.
but things are far better than what was predicted.
important to read a lot. not just the medical knowledge, but asking around to those who live through it and also reading aout your other options with alternative treatments, taking care of your whole self- mind body spirit.
I've been at the point of despair with what doctors have said to me about the dialysis, the chemo, the possiblity of being sterile, their other predictions for my life. and then i decided to fight back and do whatever i can to regain my health. so... facts are vital, but so is hope :wink: