View Full Version : My Spouse has stage 4 Lupus Nephritis...
01-08-2008, 09:04 AM
Pardon me if jump all over the place. The last two weeks have been a whirlwind...
First of all, I want to say thank you to ALL the people here who have answered questions and calmed fears and offered support. Reading the archives have proven to be very enlightening for me about Lupus.
And so, I pose my own questions....
My spouse has been diagnosed SLE. She is young - 24. She had no idea she even had Lupus to begin with.
She is diabetic as well so the steroids are making her blood sugar WAY too high...
She is in another state right now, at a hospital while they are putting her through dialysis 3x a week.
I have been doing as much research as I possibly can on Lupus but... I still have so many questions.
Is there a chance her kidneys will actually start responding to treatment? Or will she have to stay on dialysis until they doctors decide to put on the transplant list?
Also, how can diabetics deal with the steroids and high blood sugar simultaneously? She was never an insulin dependent diabetic - we had her blood sugar controlled very well with herbal supplements, exercise and diet.
Supplements can't really tackle blood sugar in the 600's as quickly as insulin can (hence why they put her on it).
As an autoimmune disease, basically, we have to weaken her immune system so it stops attacking her kidneys? Does that mean that the flu or a common cold could potentially be fatal?
Thank you again everyone.
01-08-2008, 01:20 PM
You are, indeed, her Angel :angel:
I will do the best that I can in answering your questions.
1) Will her kidneys respond to treatment?
The most common kidney disease in Lupus is Lupus Nephritis. Lupus nephritis is also known as lupus glomerulonephritis or lupus glomerular disease. Lupus nephritis occurs when autoantibodies form or are deposited in the glomeruli. Lupus nephritis (kidney disease) can be detected by finding abnormalities in the urine (such as an increase in the amount of protein) or the blood (such as a decrease in kidney function or elevated creatinine).
The goal of treatment is to improve the function of the kidney. Dialysis is usually necessary to control symptoms of acute or chronic renal failure. After dialysis, Corticosteroids or other immunosuppressive medications are often used and are very effective in reducing symptoms and/or preventing further damage to the kidney. If renal failure is severe, dialysis may be required for an extended period of time, until the kidney function improves.
The World Health Organization has established a classification system for types of lupus nephritis, which are described below.
Class I... Normal.....No evidence of lupus nephritis on the kidney Biopsy.
Class II...Mesangial Nephritis.. - Most mild form of lupus nephritis; typically responds completely to treatment with corticosteroids.
Class III .....Focal Proliferative Nephritis... Very early stage of more advanced lupus nephritis; typically treated with high doses of corticosteroids, with excellent outcome.
Class IV....Diffuse Proliferative Nephritis...Advanced stage of lupus nephritis with definite risk of loss of kidney function; typically treated with high doses of corticosteriods combined with immunosuppressive drugs.
Class V.....Lupus Membranous Nephropathy...Generally associated with excessive protein loss and edema; typically treated with high doses of corticosteroids, with or without immunosuppressive drugs.
Treatment for lupus nephritis must be individualized to the needs of the specific person. All of the following must be taken into consideration:
the amount of edema (swelling), urine abnormalities, amount of protein in the urine, reduction of kidney function, findings of the kidney biopsy.
Diuretic medications may be used to help eliminate excess fluid. Anti-hypertensive drugs can control increased blood pressure. Anticoagulation drugs are used in case of complications arising from blood clots. You and she have already made the necessary changes in the diet to control the intake of salt, proteins, and calories.
There are two major forms of drug therapy used for lupus nephritis: corticosteroids to control inflammation, and cytotoxic or immunosuppressive drugs to suppress the activity of the immune system.
High doses of corticosteroids, or even corticosteroids given for extended periods of time, may cause a number of side effects (some side effects can be lessened by a low calorie and low salt diet):
- increased appetite
- fluid retention with weight gain
- puffy face
- easy bruising
- loss of mineral from the bones
- thinning hair
- an increased risk of infection and diabetes.
High doses of corticosteroids (taken orally or intravenously) are given until the lupus nephritis improves. The dose of corticosteroids is then slowly reduced under close watch of a physician to make certain that the nephritis doesn't worsen.
Cytotoxic or immunosuppressive drugs are generally regarded as standard treatment for people with serious lupus nephritis. These drugs block the function of the immune system, which in turn prevents further damage to the kidneys. The most commonly cytoxic drug used is cyclophosphamide (Cytoxan).
Immunosuppressives that are used less frequently include: azathioprine (Imuran), chlorambucil (Leukeran), and cyclosporine (Sandimmune or Neoral).
2) Is there an alternative for steroids for diabetics?
Steroids called glucocorticoids are critical for treating Lupus Nephritis, but they also can trigger diabetes and hypertension. Hypertension (persistent high blood pressure) and diabetes (chronic insulin deficiency) both are related to insulin-resistance, in which the body does not properly respond to insulin. There are no real alternatives. If steroids must be taken, then what generally occurs is that the doses of medications or insulin have to be increased accordingly.
3) Are the flu and common cold fatal?
Not AT ALL! But, because we have compromised immune systems, our colds turn into the flu and our flu can put us in the hospital (I've personally been there more times than I like to recall). We are prone to getting viral infections and getting sick usually causes our disease to flare-up (symptoms get worse or new symptoms appear). So, we are very careful to avoid catching a cold or getting the flu. Often, a common cold or the flu can turn into some form of aggressive infection for us, so at the first sign of getting sick, we need to start treatment immediately. I always end up with a horrible sinus infection and infection in my lungs, so my doctor always starts me on antibiotics when I get sick!
Some of our doctors insist that we get the flu shot every year...some doctors (those whose patients are very ill with active disease) recommend against the flu shot. But, in now way is the common cold or the flu a fatal event in and of itself!
I applaud you for learning as much as you can about her disease. This will be a great burden off of her, to have someone who understands what she is going through. We are here to help both of you in any way that we can and as much as we can! You are not alone!!
Peace and Blessings
01-08-2008, 06:06 PM
Thank you so much for the information. It has shed a lot of light on an otherwise very confusing disease.
I realize that the road ahead of us is going to be long, tiring, and sometimes very painful. I want to be able to be for her, the support she will need as she faces this.
Each smile, each laugh, and each moment I can bring to her some amount of happiness or relief is a victory for me, for her, and for people suffering from Lupus everywhere.
The doctors also mentioned chemo as a "serious" immune system block - which you were mentioning. They told her she would go through premature menopause due to the strength of the Cytoxan and it possibly could increase her risk for uterine cancer. Is that true?
Do you know what hospitals have the most advanced treatments for Lupus? I am curious because I live in Baltimore (John's Hopkins is right down the street) and was curious if it would be a better decision for her to go to JHU after she is stabilized for treatment.
Again, any and all information is helpful.
Thank you so very much.
01-10-2008, 11:31 AM
Cyclophosphamide (Cytoxan) suppresses the production of blood cells from the bone marrow, including white blood cells (leukopenia), red blood cells (anemia) and platelets (thrombocytopenia). Leukopenia reduces the ability of the body to fight infection, thrombocytopenia impairs the ability of blood to clot, and anemia reduces the ability of blood to carry oxygen.
Cyclophosphamide also may cause inflammation of the urinary bladder with bleeding (hemorrhagic cystitis). This can result in lower abdominal pain from the bladder, problems urinating due to blood clots, and anemia due to loss of blood.
Cytoxan is an anti-cancer ("antineoplastic" or "cytotoxic") chemotherapy drug. Cancers treated with Cytoxan include: Hodgkin's and non-Hodgkin's lymphoma, Burkitt's lymphoma, chronic lymphocytic leukemia (CLL), chronic myelocytic leukemia (CML), acute myelocytic leukemia (AML), acute lymphocytic leukemia (ALL), t-cell lymphoma (mycosis fungoides), multiple myeloma, neuroblastoma, retinoblastoma, rhabdomyosarcoma, Ewing's sarcoma; breast, testicular, endometrial, ovarian, and lung cancers, and in conditioning regimens for bone marrow transplantation.
Cytoxan is also used to treat many disorders that are not cancer, such as Lupus and RA.
However, there is a slight risk of developing a blood cancer, such as leukemia or myelodysplasia after taking Cytoxan in high doses for a long period of time. I have not heard of Cytoxan causing uterian cancer, but it might be advisable for her to talk to her doctor about the risks listed here.
Perhaps someone in your area will be able to help you with information regarding the best place to receive Lupus treatment. If not, I can do a search for you, if you like.
Peace and Blessings
08-27-2008, 01:34 AM
I have just found out that I have stage 4 lupus nephritis, I have been reading your correspondence above and was curious how your girlfriend was doing?
I have been recommended to start taking cyclophosphamide and have my obvious hesitations so would be interested to hear how she has responded to treatment.
It is a very scary thing but in a strange way it's comforting to know that there are other people out there going through it to.
08-27-2008, 02:36 PM
Just read your post...sorry you are suffering. Just wanted to suggest that you post your question in the Medications part of the forum...you might get some response there.
Best of luck to you.