When it rains it pours....

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couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/26/2012 1:50 PM (GMT -6)   
smhair   smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair smhair
 
Got a call from my Rhuemy....results from my latest testing...
 
Major protein in urine! skull
 
The nurse is setting up an appointment for me with my mother's kidney doctor.
 
I'm ready to crawl in a hole and hide. Maybe old lupe won't keep shooting at me! tongue
 
Okay, tell me what a visit with a nephologist is like... (sigh)
Joy

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 7/26/2012 2:44 PM (GMT -6)   
They ask you lots of questions. I had to pee in a cup and the nephrologist looked at it under a microscope while i was there. Looked over bloodwork, ran some more and started treatment!
Amy
Lupus Moderater


dialysis from lupus nephritis

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/26/2012 2:49 PM (GMT -6)   
Does lupus nephritis ever get cured or is it one of those things that you just keep on managing?
Joy

NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 541
   Posted 7/26/2012 4:28 PM (GMT -6)   
I'm so sorry Joy. Hang in there. I've had protein in my urine before but nothing that was worrisome. Hopefully, you will be able to control it and things will be okay.

Hugs,
Mary Ann

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 7/26/2012 5:36 PM (GMT -6)   
Protein spillage is usually controlled by a bp medication called lisinopril. It depends on the body...some people have one or two bouts of nephritis and others have to keep managing. Just like lupus, you have your flare ups and thenyour periods of not flaring.
Amy
Lupus Moderater


dialysis from lupus nephritis

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/26/2012 5:51 PM (GMT -6)   
Kidney disease runs amok in my family. My brother has polysitic kidney disease. My mother has diabeties and stage 4 kidney disease. My cousin has polysistic. My third cousin has it too. My grandfather died of nephritis.

They all started with high protein spillage. :P

Sorry just freaking out some right now....need to vent!
Joy

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 7/26/2012 6:22 PM (GMT -6)   
Well you certainly are not any of them. Everyone body is different. And Polysistic disease is nothing close to nephritis. And the more you freak out, the more you stress out, the worse it is on your body. And treatment for lupus nephritis has come along way. BUT, lets wait and see what the doctor says. He is the expert, not any of us. Just make sure you follow your medications strictly they put you on.

Also, try not to think about it until you talk with your doctor.Then you will be more informed and will be able to think about what he told you is going on with you, and not all your family members. Is your creatinine still within normal ranges?
Amy
Lupus Moderater


dialysis from lupus nephritis

DQueen
Regular Member


Date Joined Jun 2008
Total Posts : 90
   Posted 7/26/2012 6:25 PM (GMT -6)   
I'm so sorry Joy! The nephrologist will probably want more urine & blood. If things look serious, he/she may want you to have a kidney biopsy to see what exactly they are dealing with. (I have had 3 in the past 6 years.) My docs put me on a several bp meds, along with prednisone & cellcept. Good luck with everything!
Lots of love,
DQueen

Diagnosis: Lupus, Rheumatoid Arthritis, Reynauds, Gout, High Blood Pressure, Anemia, Congestive Heart Failure, Chronic Kidney Disease

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/26/2012 7:18 PM (GMT -6)   
I don't know, Amy. I talked to the nurse and she was in a hurry because she was swamped with patients. In his office it's just him and her on Thursdays.
I'm going to ask her to mail me the results when she calls back with the appointment time.

DQueen, I've been reading up on the medicines they use to treat LN. More expenses $$$$$$$$$$
Joy

DQueen
Regular Member


Date Joined Jun 2008
Total Posts : 90
   Posted 7/26/2012 9:17 PM (GMT -6)   
Yes, unfortunately some are very expensive, especially the cellcept. Thankfully prednisone is dirt cheap though. I had problems getting my insurance company to pay for Cellcept. If your lucky though (yeah right, cuz we're all so lucky with this disease, right?) maybe you can take the generic form of it, or maybe azathioprine. They are both much more affordable. Unfortunately I was unable to take either one. Maybe your body will tolerate them better than mine, or maybe you won't even have to take any of them. I hope that you don't! Good luck again & let us know what you find out!
Lots of love,
DQueen

Diagnosis: Lupus, Rheumatoid Arthritis, Reynauds, Gout, High Blood Pressure, Anemia, Congestive Heart Failure, Chronic Kidney Disease

NDsomeday
New Member


Date Joined Aug 2012
Total Posts : 5
   Posted 8/3/2012 9:11 AM (GMT -6)   
My nephrologist just did a 24 hr urine and some other urine spot tests, followed by a biopsy. They switched me from Imuran to Cellcept (I took the generic), and added a blood pressure pill. I was already on prednisone. Mine went away and hasn't come back! I no longer have to take the blood pressure pill, and got switched back to Imuran. I also, strangely, stopped getting kidney infections at the same time! I used to have them all the time. I don't have to see the nephrologist anymore, unless something comes up with my routine urine tests my Rheumy orders. It's been a year since. I hope you have similar luck! Try not to freak out... Easier said than done, I know :) Also, the biopsy wasn't bad. I
used to needles, but procedures like that still freak me out. I expected to be in a lot of pain after, but I wasn't. Good luck!
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