Lupus Nephritis? confused and v.worried!
Hello, I'm new to this board and I'm waiting for a diagnosis for Lupus Nephritis and wondered if anyone could offer advice. :)
I'm having more tests done to see if I have lupus nephritis as a recent biopsy was 'unclear'. They first thought it was post infectious after a bad illness at xmas, but when i didn't respond to steroids they decided to take another look at my biopsy.
Felt tired for a few years now, but burnt on a sunbed in Jan just beore i got blood in my urine and achy joints and tiredness but carried on as normal. I've never really felt very poorly, I was still coming into work. I mentioned this to the nephrologist who dismissed the sunbed as the cause and asked about my medical history (regular strep throat, teenage glandular fever, frevent UTI's)
My ANA came back negative, so they are running more tests. I've just had a load of blood taken and I'm really worried. Apart from being a bit tired I've felt fine all year and this is all a big shock! I'm having a lot of trouble coming to terms with it.
The main joint pain was in my neck and the base of my spine, but i spend 8hrs a day at a computer and these go when I'm not on the computer.
I have no other strong signs of Lupus apart from the kidney biospy - which is yet to be proven. Is it possible to have a case that effects just your kidneys? Also, is it likely that the sunbed caused it? Does this even sound like Lupus? v.worried at the moment. Many thanks for any help/advice.
i have lupus nephritis. doin OK
I've had lupus SLE and lupus nephritis since 1992.
in 2002 it got REALLY bad, with my legs and feet to swollen to wear shoes and the kidney docs predicting i'd be getting dialysis/ transplant within 5 years. long story short, I've done the prednisone, quit chemo after 2 treatments 9it made me extremely sick and i was on a TON of prednisone and 8 otherr drugs anyhow- personal decision)- did a bunch of alternative medicine and now I'm fine. no more compresison hose, legs aren't swollen.
i am on lisinopril (BP med), drink water and have to rest a lot. 10 hours sleep a night minimum, and pacing myself with activities, but i am nto chained to a dialysis machine and i feel OK.
still getting regular blood tests so it doesn't get out of control again.
but things are far better than what was predicted.
important to read a lot. not just the medical knowledge, but asking around to those who live through it and also reading aout your other options with alternative treatments, taking care of your whole self- mind body spirit.
I've been at the point of despair with what doctors have said to me about the dialysis, the chemo, the possiblity of being sterile, their other predictions for my life. and then i decided to fight back and do whatever i can to regain my health. so... facts are vital, but so is hope :wink: