Lupus

[MooseMom]

My husband's secretary strongly suspects she has developed lupus; she is being tested for it and is awaiting results.  She has the nasty skin rash that you sometimes see in people with this disease.  I know that lupus can affect renal function, so I was wondering if anyone here has renal insufficiency/failure due to lupus.  If so, can you tell me something about it?

Thank you.

[angela515]

Hello MM.

I was DX'd with SLE (Lupus) when I was 12 yrs old. I had almost all of the symptoms for Lupus that you can have, including the "butterfly rash" on my face. Once I was DX'd, me and my mom looked back a few months and we realized there was signs that we didn't know were signs at the time they happened. Such as, I felt like I was walking on "marbles" anytime I walked, it was painful. My joints would sometimes hurt to move them and got a little inflamed. We figured I was going through "growing pains" and shrugged it off as they came and went throughout the months before. Then one day I was outside playing football with my brothers and the next day it looked as if my thumb was broken. I couldn't move it or anything and it was completely swollen. So we went to the dr and he didn't even need to take an x-ray of it, he just looked at it and sent us to a Rheumatologist. Once I went there he looked at it, and said right away it was Rheumatoid Arthritis. He did tons of blood work to confirm that it was so, and to see if I had Lupus due to some of my other symptoms.

Months passed and then I finally got my results, and then it was like my Lupus just went crazy on me and I woke up in the hospital the next day not knowing that my dad brought me because I had a seizure on the couch and didn't know who he or anyone else was, and I had another one in his arms on his way into the ER doors, and a few more once I was in the ER. Which I was DX'd with "high-blood pressure induced seizures". So now anytime my blood pressure goes too high, I will have a seizure.

Okay, long story short, after a few years went by and I was in and out of the NICU and ICU so many times I couldn't tell ya how many. Then we started noticing that I was gaining some weight, and I noticed I wasn't really going to the bathroom that much. Next thing I know I am put on chemo therapy (cytoxan) because my kidneys were failing from the Lupus. After doing that for 18 months, they took me off of it and my kidneys had gotten back to normal. So I go on and live my life for another year or so, and it starts happening again, my kidneys start failing again and my dr wanted to do Cytoxan again, but during that time my mom's company was going through a buy out and we were without insurance for a few months, so they wouldn't give me the cytoxan and they literally told me i had to "wait it out until my kidney failure is bad enough for dialysis.".... I don't like to remember those words because if I could go back in time, I would probably do something terrible to them for saying that to me.

Anyways, I went on dialysis eventually and luckily my mom was a match and I only had to be on dialysis for 7 months the first time around. My moms kidney lasted 5 years, and I had 2 kids with that kidney. Then in 2004 my transplant failed and I went back on dialsysis, and was on it until 1-14-2007 when I got a perfect match from a deceased donor. That is still working fantastic and wonderful.

Anyways, that's my story in a nutshell kinda, but if you have something specific I can maybe answer for you that I didn't answer in my ramblings, please feel free to ask and I'll do my best to answer.

Angie <3

[angela515]

Oh.. I forgot to mention all the "main" symptoms of Lupus.

* Fatigue
* Joint and Muscle pain
* Skin problems - such as the "butterfly rash"
* Sensitivity to light.
* Memory loss is sometimes common, big time for me.
* Heart probelms. Such as inflammation of the heart or heart arrhythmia. I had both.
* Low grade fevers. (This is often the first sign of the disease)
* Changes in weight. Losing weight is the first weight change you will notice... the gaining weight comes with the failing of the kidneys.
* Hair Loss.
* Swollen lymph nodes.
* Swelling in the hands and feet.
* Anemia.

Angie <3

[MooseMom]

Oh thank you so much for such a detailed response; I do appreciate it and am so glad you aren't having to deal with dialysis anymore.

My husband's secretary is still awaiting test results.  Ironically, her husband is diabetic and had a kidney transplant in 1985; it is still going strong.  It would be awful if now she had to deal with kidney failure, too, but hopefully it will not come to that.

If I think of some more questions, I'll let you know.  Thanks again, and congratulations on doing so well despite so much.  I didn't realize that Lupus could be so devastating.

[angela515]

Anytime.

It's good she's getting tested now, because there is a lot of pre-emptive measures they can take nowadays to keep your kidneys working longer if they did start to be affected.

Angie <3