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View Full Version : nephrotic syndrome, anyone else out there?



notsurerfh
02-23-2009, 09:52 AM
Just wondering if anyone else out there has this condition. I've been diagnosed and would love to share info and collect info regarding this disease. I am told it's rare in women let alone someone as young as I am. It can be affiliated with lupus but in my case it isn't. They said it probably is some other type of auto-immune reaction. The biopsy I had shows membranous nephropathy, meaning that there isn't a difinitive reason.

We aren't very big in Watertown, NY so no one else has been diagnosed with it except me. So I'm a little lonely and figured here was as good a place as any to start looking for others like me! It is a little odd to be known by name at the doctor's office because everyone else is quite a bit older than I am. It's also a lot scary to be the only one and not know what to expect or have someone to talk with about it.

Saysusie
02-23-2009, 10:47 AM
Hi notsurerfh:
I will give you a bit of information about nephrotic syndrome. Hopefullly, someone who has personal experience will be along to offer your their insights.
Many Lupus patients also suffer from protein in the urine, but Lupus is not the only auto-immune disorder that can cause this syndrome. Nephrotic syndrome is caused by various disorders that damage the kidneys, particularly the basement membrane of the glomerulus. This then, causes abnormal excretion of protein in the urine. Nephrotic Syndrom can also be caused by an infection, the use of certain drugs, cancer, genetic disorders, or diseases that affect multiple body systems; including diabetes, lupus, multiple myeloma, and amyloidosis. It can also be a symptoms of kidney disorders, such as glomerulonephritis, focal and segmental glomerulosclerosis, and mesangiocapillary glomerulonephritis (a type of kidney disease caused by inflammation of the internal kidney structures (glomeruli), which help filter waste and fluids from the blood).
Doctors will usually want to run several tests to try to determine the cause of the syndrome. These tests include:Glucose tolerance test, Antinuclear antibody, Rheumatoid factor, Cryoglobulins, Complement levels, Hepatitis B and C antibodies, VDRL serology, Serum protein electrophoresis, or Kidney biopsy. The goals of treatment are to relieve symptoms, prevent complications and delay progressive kidney damage. If the syndrome is caused by an underlying disease, treatment is usually geared towards that underlying disease. Treatment usually consists of Corticosteroid, immunosuppressives, antihypertensive drugs, and diuretic medications. Antibiotics may be added to help to control infections. Angiotensin converting enzyme (ACE) inhibitors have been successful in reducing the amount of protein loss in the urine and are therefore frequently prescribed for treatment of nephrotic syndrome.

I hope that this was helpful
Peace and Blessings
Saysusie

notsurerfh
02-23-2009, 10:56 AM
thanks for the info. I'm on the ace inhibitor now and hoping that works. If not we will have to try a more drastic approach and those other drugs have serious side effects. keep me posted if you come across anything else or hear of anyone with the same condition.

mercedesrobb
05-06-2009, 02:19 PM
Hello everyone. I was just diagnosed with SLE. I have been sick for years though and never knew why. Im concerned because I have blood and protein in my urine, and they found two 5cm lesions on my left kidney via CT. They want to do an ultrasound Friday but I am nervous and was hoping someone on here had been through the same thing and could shed some light on what could be going on. Thanks to all that write.

wrightrs
05-06-2009, 05:31 PM
Hello everyone. I was just diagnosed with SLE. I have been sick for years though and never knew why. Im concerned because I have blood and protein in my urine, and they found two 5cm lesions on my left kidney via CT. They want to do an ultrasound Friday but I am nervous and was hoping someone on here had been through the same thing and could shed some light on what could be going on. Thanks to all that write.



Hope your ultrasound goes well. I'm also concerned because I have protein too. But can't seem to get to the bottom of it.

mercedesrobb
05-06-2009, 05:47 PM
thanks for writing. i will post what happens on friday. take care!

Saysusie
05-07-2009, 09:44 AM
Hey;
still no one with nephrotic syndrome who can give some personal experience and/or advice to Notsurerfh???:wideeyed:
Or has it already been done elsewhere in the forum?

Peace and Blessings
Namaste
Saysusie

Saysusie
05-07-2009, 09:46 AM
Welcome Mercederobb:

I also hope that your ultrasound goes well on Friday. Keep us posted:yes:

Peace and Blessings
Namaste
Saysusie