lupus nephritis

Hi, Kelly

I don't have any experience with lupus nephritis, but can imagine how worried you must be. I do want to welcome you to the forum. There are so many great folks here, some of whom have lupus nephritis and will be happy to share with you. I'm happy you came here. The forum is very active and you'll meet people who are not only knowledgeable about autoimmune diseases, but also supportive of each other.

Tell us more about yourself. I look forward to hearing more from you.

Pat

i m now taking 7.5mg steriods, 100 mg imuran and 8mg perindopril...

i cant do any more cytoxan as i already take 17 before..

i have been lupus nephritis for about 14 yrs...

n he told me..my condition seem now a bit serious n my kidney now seem started to "not function "well..

i m so worried..

i asked him whetehr need dialysis..he said not so soon ,n need to observe..i really dunno what can i do..

i hope doctor k help me..n my doctor now review me monthly..

thanks

Hi Kelly,

I'm one of those who ended up having some pretty serious issues, I had a transplant in March of last year--06.  Doing great now, knock on wood.  I have had kidney issues for about 14 years as well.  I still don't have a definitive diagnosis, was told originally I had Lupus Nephritis, but then they took that away, saying I didn't have enough criteria to warrant a diagnosis of Lupus.  I've got a "lupus-like autoimmune disease".

It sounds to me like your doctor is on top of things, you've been through the cytoxan, are on steroids and immunosuppressants now.  There are other immunosuppressant meds that it sounds like you haven't tried yet, some of them are really good.  You're doing what you need to do, be on top of things and keep monitoring your labs.  How's your blood pressure?  Keep a positive outlook and keep doing what you're doing.  Best of luck to you!

Lori

Hi Kelly,
Just to allay some of your fears...your labs aren't that bad, I've seen much worse, and people function just fine with them. I know you're worried, it's hard not to be. Before my transplant, my creatinine was 6.3, and I was spilling 8 gms of protein in my urine. You've got to get a lot worse before they start talking dialysis, or anything drastic, and hopefully, keeping on top of things, it will never get that bad!
I'm also a nurse, and was able to work full time up until the time of my surgery. I know others aren't as fortunate, and believe me, I am so grateful that I've been able to do as much as I have.
Feel free to email me any time also, my email address is in my profile here. Take care,
Lori

Hi Kelly,

I don't have any kidney problems. I just want you to know I'll be thinking of you and keeping you in my prayers. Stay strong, keep a positive outlook and keep smiling and laughing. Attitude is really important!

xoxo emmie

hi kelly, i'm actually in the same boat that lori is in, i had a kidney transplant in april '06 and before that i was diagnosed with lupus nephritis in '95 when i was 13. i agree with lori, your labs arent too bad, i was in remission for about four years and my creatinine stayed at about 1.3- 1.5 and i didnt have any problems until i flared in '03. however, my lupus came back last month and is now attacking my new kidney, so the docs are pumping me full of prednisone and more anti-rejections, hopefully that can get rid of it and save my kidney, feel free to email me, my email address is on my profile, if you need to chat.
suzanne

Dear Kelly!

I am going share and cry too. For what is said and for what goes unsaid. I have ache for all this suffering herein too.

I have an identical twin sister, Meshelle, she is loved with a love that is grateful and a love that continues to grow. I feel it can't be described to singletons what it is like to be a twin. There has always been a pair bond, a sharing, a knowing, and a higher intimacy threshold that can't be understood except by experience. This is the way I feel towards her.

As twins unfortunately we both have Lupus, often it is a matter of what's going on individually or together. She was diagnosed in '97 at stage 4 Nephritiis. I never saw anyone so Desperately ill as she has been. (Even considering my heart, liver, kidney flares)

As identicals our DNA is the same yet, this has bypassed me. We had seriously and jokingly talked of "spare parts" if ever either of us were in need. There was no questions, options or choices that was it whatever we had was "communal property".

I often think about the fact we were once the same cell. The same cell! I rejoice thankfully she is doing well today ... that was the greatest battle of our lives. She wasn't alone, I was there with her in any and all ways I could be. I never seen anyone so deathly desperately, ill as she was at times. Too often, with various complications it became a fight to live. It was an all out war for her to be alive today.

This is Lupus at it's worst! The years wasted being sick All of the medication. The horrid side effects. The helplessness of not being able rid one's body of this. Words can not convey this disease. The losses are incalculable.

~i~ Meshelle's Twin Sister Melaine ~i~