Lupus (SLE)

[joseph_towey]

Anyone here in this situation because of Lupus Nephritis? If so, I'd like to hear from you and what your experience has been like. I've got some difficult decisions lying ahead of me and I want to make sure that I make an informed decision.

Thanks,

Joey

[angela515]

I was diagnosed with SLE(Lupus) when I was 12 years old. I started having some little symptoms, which at the time we did not even think of them as symptoms because I was a healthy 12 year old kid. We just thought they were "growing pains", some of the things that were happening were I was walking to school over a mile everyday to and from, and one day it felt as if I was "walking on rocks", my mom shrugged it off to growing pains and after a week or so it went away. ONe day after playing catch outside with my brothers, my thumb got swollen the next day, my mom thought I broke my thumb, we went to the dr's office... doctor looked at it and said no x-ray needed, it isn't broke, i'm sending you to a rheumatologist. So off we go, and he says I have RA (Rheumatoid Arthritis), that started a series of tons of blood work and other tests. After months and months of testing, I'm dx'd with SLE.

One day I don't feel well, like flu like feeling.. I had a tummy ache and wanted to lay down. So I was in my bedroom sleeping while my dad was in the den chatting with a neighbor. For some reason I got up, and went and layed on the couch where I could be seen (never done this before or ever again in my life) and I had a seziure. My dad rushed me to the ER and carried me in while I had another seziure in his arms. I had many more while in the ER, they were all caused from uncontrolled high blood pressure. This caused a series of hospital stays. I was in the hospital months at a time, on over 9 different blood pressure medicines and still unable to control my blood pressure. I was transferred by ambulance to another city and hospital (Shands in Gainsville, FL) and after a month of being there they got me under control and sent back to my home hospital in Jacksonville, FL.

Year's I was in and out of the hospital with uncontrolled blood pressure and seziures, and my RA got so bad that I literally had to crawl to get around the house, with knee pads on, or don't move at all. In order to get off the couch, I had to sit and rock myself like an old person, and still lucky if I got up.

Finally around age 15 my kidneys started failing. The doctors started me on cytoxin treatments (chemotherapy), after doing this for about a year, my kidney function went back to normal.

Due to being on very high doses of presnisone and at times solumedrol (IV form of prednisone) my ankles started to deteriorate, and my orthopedic surgeon (OS for the Jacksonville Jaguars at the time) fused both of my ankles together so I have 2 screws in each ankle, and was told I will not walk ever again. However my srugeon was so awesome, I can walk, and nobody knows I have fused ankles unless I tell them. 

I turn 17, and my kidneys start to fail again, this time i'm between insurance companies so I have no insurance, so they cannot do the cytoxin again as planned.... so I'm told that there's nothing they can do but let my kidneys fail, and when I can start dialysis the goverment will pay for that. 

There's so much more in the middle of all that, I can't even begin to fit it all in... however you must remember EVERYONE with SLE, has different experiences and stories and no 2 people with the same disease deal with it the same way, or go through the same issues.

Good Luck sweety.

[st789]

I experienced seizure too just like the way you described it.  After a night of Pd dialysis, for some reasons, I went to the couch in the living room and the rest is history.  Yike.

[Tanis]

I was diagnosed with Lupus in march 2005.  But my first symptoms started in February 2004.   I had a skin rash on my arms, then slowly it went all over my body.  i didn't really think anything about it.  I went to my family doctor and he prescribed me some cream, well the cream didn't work.  So the doctor thought maybe it was an allergic reaction, so he prescribed me Benadryl.  The benadryl worked for awhile.  then my joints were starting to get really sore, and started swelling up in the fingers.  In the morning my lips would be swollen too.  Again i went back to the doctor and he did a skin biopsy on one of the lesions.  That came back negative.  So in June of 2005, he sent me to a dermatologist.  He didn't know what the skin rash was caused from.  He did know that i had alot of protein in my urine though.  So anyways i came home again and didn't really worry about it to much.  then in September i got pregnant with my fourth baby.  The skin rash suddenly disappeared but my urine was a dark tea color.  My family doctor never said or did anything about.  So i didn't worry about.  Then when i had hit my second trimester of pregnancy, my legs started to swell.  I new that wasn't normal so i called the hospital and they told me to come and see the doctor so i did.  The first thing that he did was check my blood pressure.  It was high.  So i got admitted into Ste. Rose General Hospital.  I was there for four days.  They got my blood pressure down and then i was sent home, that's when i knew that it had to do with my kidney's.  After that i was in and out of the hospital for high blood pressure.  This one time my bloodpressure was 100 over 200.  My family doctor didn't even know what to do.  He was on the phone with other doctors i presume.  Finally he made an appointment with a Doctor from Dauphin, Manitoba the next day.  He told me make sure you go tomorrow to see him.  So the next day my boyfiend and i went to see this doctor.  He took my bloodpressure and looked at my bloodwork,  checked out my bad edema.  Then he asked if i could get to Winnipeg tonight.  I told him no so then he admitted me into the Dauphin Hospital,  and the next morning i was sent to The Women's hospital in Winnipeg, Manitoba.  They performed a bunch of tests, but they couldn't figure out why my kidney's were failing.  I was so scared and lonely for my family, i had three small children at home with there father.  he was so scared because he didn't know what was wrong with me.  I stayed at the Women's hospital for one week, i begged and begged for the doctor's to let me go home, my bloodpressure went down anyways.  So they let me go home as long as i would be on best rest.  i agreed to do what they told me.  I came home and was only home for 10 days.  my bloodpressure went very high again.  So they sent me back to women's hospital.  I stayed their right until had my baby.  The doctor's wanted me to have the baby at 30 weeks.  i ended up having him at 27 weeks and 3 days. February 6, 2005.  March they did a kidney biopsy and discovered that it was Lupus that i had.  They started me on high dosed of predinsone and chemotherapy for 6 months.  that helped then they started me on cell cept that made me feel really sick.  Then they started me on Imuran, that dropped my blood count.  it was already really low, they had me on arenesp,  i still take that.  Then they put on hydroxychloriquine, which I'm still taking right now.  Anyways i lived like that for 3 years until finally  i had to start dialysis.  I started Dialysis August 15th, 2007. 


Good luck