Lupus Nephritis1

"Lupus nephritis is the term used when Lupus causes inflammation in your kidneys, making them unable to properly remove waste from your blood or control the amount of fluid in your body. Abnormal levels of waste can build up in the blood and edema (swelling) can develop. Left untreated, nephritis can lead to scarring and permanent damage to the kidneys, possibly even end-stage renal disease(ESRD)."

There are very few signs or symptoms of lupus nephritis.

• It does not cause pain in the abdomen or back.
• However, when protein leaks from the kidneys, it is eliminated from the body in the urine
• Foamy, frothy urine and getting up to urinate during the night can suggest excessive protein loss.

The loss of protein in the urine from lupus nephritis may then lead to fluid retention with weight gain and swelling (edema). This is often the first symptom noticed of lupus nephritis.

• The edema generally appears as puffiness in the feet, ankles and legs.
• This swelling will be absent in the morning, but will gradually worsen as the person walks about during the day.*

  I went to my PCP regarding some migraines I had been having for a few weeks. I assumed the migraines were from stress as we had just moved  from New Mexico back to Texas. I was feeling guilty about moving because we had uprooted our family due to my having Lupus. After my fem-pop bypass we found ourselves coming to Lubbock at least  monthly for doctors appointments. Every time I was sick I would be sent to Lubbock so it made sense to live here.  My PCP did routine labs and did not like the results of my urinalysis, she had me see my Rheumatologist the same afternoon. I didn't see the big deal; I still thought migraines was all I was dealing with. My Rheumatologist did labs and called me to come in for the results. I assumed that I was in a flare however not only was I flaring I also learned I had nephritis.

  Since I thought the appointment would just be to give me prescriptions for the flare, I went to the appointment myself. I was devastated because the hardest thing for me was going to be telling my husband and daughter. I needed to get my emotions under control so I could tell them without alarming them unnecessarily. I invited my husband to lunch and told him. We cried together and then made a game plan to tell our baby girl that I would have to have surgery again.  The next step was to stage the nephritis and we had to do that by having a kidney biopsy. We wouldn't know what we were dealing with nor how to treat it without it being staged. 

Table 1. World Health Organization (WHO) Classification System for Lupus Nephritis

Class	Designation	Comment
I	Normal	No evidence of lupus nephritis on the kidney biopsy.
II	Mesangial Nephritis	Most mild form of lupus nephritis; typically responds completely to treatment with corticosteroids.
III	Focal Proliferative Nephritis	Very early stage of more advanced lupus nephritis; typically treated with high doses of corticosteroids, with excellent outcome.
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.
V	Lupus Membranous Nephropathy	Generally associated with excessive protein loss and edema; typically treated with high doses of corticosteroids, with or without immunosuppressive drugs.

Once the biopsy was results came in I was staged at Class IV. Unfortunately Class IV is the most severe type. I can admit that the bottom dropped out of my world. I'm not one who goes straight to hysterics but this time I did. I tried to convince my husband to divorce me and find someone healthy, I tried to convince my then supervisor to fire me, and I went on and had a giant poor me pity party. It took a few days to work that out of my system and get on with finding out my treatments options.

  My rheumatologist who is very aggressive met with my husband and me and offered us 3 choices of treatment.

1. IV Cytoxan for a 1 year or more(Cytoxan is a chemotherapy used to treat breast cancer)

2. Oral cytoxan for 5 years

3. The last option was to do nothing aggressive, try an immunosuppressive and wait and see.

   The rheumatologist had us meet with 2 patients of his. One of the patients  had done Cytoxan treatments and was doing great. The other patient we met opted to do nothing. She was on dialysis and was waiting on a kidney transplant. I was shocked that her biggest worry was about treatment was losing her hair. 

 My husband and I discussed it and we decided to do the IV Cytoxan.  However instead of 1year of Chemo I wound up having 3 years of it. Chemo  was hard , even at the small doses (compared to cancer patients) that I was on. The first 6 months were not to bad, after that it got really hard. My hair thinned but I didn't have any significant hair loss. The worst part was nausea and fatigue and they happened about half way through the treatments. In the beginning of the treatments I would do them in the morning and then go to work in the afternoon. After about 6 months of that I would have to take the afternoon off so I could sleep. 

 The Cytoxan did it's job. It slowed the progress of the nephritis and I am now on a immunosuppressive medication called Cellcept. Cellcept is typically used for organ transplant patients to keep their bodies from rejecting the new organ. Cellcept helps suppress my immunity and helps keep my body from rejecting my kidneys. It has helped quite a lot. I've not had but one scary moment with spilling protein since I finished chemotherapy. Luckily for me IV solumedrol did the trick because I wasn't looking forward to chemo again. 

 

  

*Lupus Foundation of America

Comments

[letty]

i had a biopsy in nov n i have a cyst on my rt kidney wish the urologist says it hasn't grown just watching it for now . other drs want it removed making me think it cancer . so i find out on jan 20 what the results are