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01-02-2009, 02:18 PM
I had my doctor appointment and got an answer. just wondering if anyone else has had the same prognosis. my doctor says i have nephrotic syndrome and now need a kidney biopsy. just wondering what to expect. and if this can help confirm if i have lupus or not. a little nervous about the procedure but really want to get better. thanks for your input and hope everyone had a great new year.

01-03-2009, 01:44 AM
Welcome to the forum :!: I am sorry to hear that you are going through a rough time right now :( The good thing is you have joined us and we can help you get through this :) I think you should search kidney biopsy. There is a lady who just went through one. I really hope she sees this and lets you know what to expect. I know you will find it if you use the search button right above. She was very nervous but she did well :) Good luck and keep posting and let us know how it gors :wink:

01-05-2009, 12:32 PM
Hi notsureif,

I too am going through various kidney involvement testing. My dr. did a creatin level test and GFR (both blood tests). I tested "kidney failure borderline" on these tests, and presently scheduled for an ultrasound, and a visit with a nephrologist. I can not remember the lady's name that has gone throught the biopsy, but I will search back in posts, and see if I can find her. She said they made her lay flat on her back for 24 hours after the procedure.....this is what scares me to death. I can not imagine being able to lie on my back stretched out....I always have to curl inward to try to get relief from the many symptoms.

If i find her posts, I will get back with you.....good luck, and keep us posted.

share a smile today,

01-05-2009, 01:03 PM
A biopsy is a diagnostic test that involves collecting small pieces of tissue, usually through a needle, for examination with a microscope. A kidney biopsy can help in forming a diagnosis and in choosing the best course of treatment. You will be required to sign a consent form saying that you understand the risks involved in this procedure. The risks are slight, but you still should discuss these risks in detail with your doctor before signing the form.
Make sure that your doctor is aware of all the medicines you are taking and any drug allergies that you have. You should avoid aspirin and other blood-thinning medicines for 1 to 2 weeks before the procedure. Some doctors advise their patients to avoid food and fluids before the test, while others tell patients to eat a light meal. Shortly before the biopsy, blood and urine samples are taken to make sure that you don't have a condition that would make doing a biopsy risky.

Kidney biopsies are usually done in a hospital. You will be fully awake with light sedation. A local anesthetic is given before the needle is inserted. you will lie on your stomach to position the kidneys near the surface of your back. The doctor marks the entry site, cleans the area, and injects a local painkiller. For a biopsy using a needle inserted through the skin, the doctor uses a locating needle and x-ray or ultrasound equipment to find the kidney and then a collecting needle to gather the tissue.
You will be asked to hold your breath as the doctor uses a spring-loaded instrument to insert the biopsy needle and collect the tissue, usually for about 30 seconds or a little longer for each insertion. The spring-loaded instrument makes a sharp clicking noise that can be startling, so don't get frightened when you hear it. The doctor may need to insert the needle three or four times to collect the needed samples. The entire procedure usually takes about an hour, including time to locate the kidney, clean the biopsy site, inject the local painkiller, and collect the tissue samples.

Nephrotic syndrome is a disorder of the glomeruli (clusters of microscopic blood vessels in the kidneys that have small pores through which blood is filtered) in which excessive amounts of protein are excreted in the urine. This typically leads to accumulation of fluid in the body (edema) and low levels of the protein albumin and high levels of fats in the blood. Diagnosis is based on blood and urine tests and sometimes imaging of the kidneys, a biopsy of the kidneys, or both.

Nephrotic syndrome can be primary, affecting only the kidneys, or secondary, caused by a vast array of disorders that affect other parts of the body, most commonly diabetes mellitus, systemic lupus erythematosus, and certain viral infections. When the cause is systemic lupus erythematosus or diabetes mellitus, drug treatment often stabilizes or decreases the amount of protein in the urine. Whenever possible, specific treatment is aimed at the cause. If the cause is systemic lupus erythematosus, treatment usually consists of corticosteroids and other drugs that suppress the immune system, such as cyclophosphamide.

I hope that this information has been helpful to you. Good Luck on your procedure!

Peace and Blessings

01-07-2009, 08:43 AM
thanks for all of the information. i have been doing some reading up on it and i'm really hoping this test will be the one that diagnoses me. not looking forward to the laying down part, i also am only comfortable on my side. thanks for the luck and well wishes.

01-07-2009, 05:58 PM
Hi notsurerfh

Have you tried using a body pillow to get comfortable?

I bought one at wal mart for $14, it's just a looooong tube pillow but I use it to brace my sore body parts when I'm having trouble laying down.

01-07-2009, 06:59 PM
Hi saysusie,

thanks for the great info. Are you aware of any alternate treatments other that cortestorids or immunesuppressents?

I see a nephrologist on monday to go over my kidney ultrasound that i got today. I would really try to avoid high doses of either of these meds, so i am looking for alternatives.

Also, are there other ways that lupus can effect the kidneys?

hand in there notsureif, we will get through this process together, and will learn a lot.

share a smile today,

01-12-2009, 06:39 PM
Since suppressing the over-active immune system is crucial in the treatment of kidney disease in Lupus, many alternative treatments are discouraged. You will find a lot of things on the web that claim that homeopathic remedies and diet changes can cure kidney disease. I would not venture into any of these alternatives without the permission of (and monitoring by) a rheumatologist.
As I mentioned in my other post, intravenous cyclophosphamide and corticosteroids comprise the standard care for lupus nephritis. However, considering cyclophosphamide's numerous toxicities, both doctors and patients are always looking for a less toxic, alternative treatment.
The only one that has had proven success so far is mycophenolate mofetil (AKA: Cellcept). Mycophenolate mofetil has also been a standard treatment in the prevention of solid-organ transplant rejection.
Perhaps you can discuss this drug with your doctor.

Peace and Blessings