New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 10/16/2009 4:35 PM (GMT -7)   
Hey Judy! I have a few questions for you about Kidneys...Can you email me? I would email you but can't find your email. Thanks so much!!!!

Amy

 

Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril, hydrochlorothiazide, Midrin, Ambien, Flexeril, Ultram, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 10/17/2009 8:34 AM (GMT -7)   
Well nevermind about the email...I figured I can post my questions on here that way anyone else who want to can respond as well. I went and had blood work done on tuesday and got a call Thursday morning to come in at 10:45. I went in and he pretty much told me my kidneys are in a hell hole. That I am spilling more protein (forgot the amount), I have a ton of blood and my function is getting worse each time I do blood work. I was also told depending on my blood work I will get done next week, I will have to have a shot to help my body produce more red blood cells. My Potassium is out the roof, so he told me not to eat any citris or potaotes and bananas and decreased my Lisinoprl back down to 20mg. My kidneys are pretty much where they were when I had my biopsy in Jan. He told me that he had been researching Lupus Nephritis and the treatments he says that everywhere recommends are if cellcept is started first with no luck move to cytoxan. If cytoxan is started first with no luck move to cellcept. He said there was nothing on if both treatments didnt work. He and my rhuemy are getting together first thing MOnday to discuss my case. My rhuemy was on vacation this past week so he couldnt get with her when he wanted to. I was put under the impression they arnt sure what to do. So I was curious as to what you have/had tried. I know you did the cytoxan and that you are curently on cellcept but did you try anything else? How soon after your diagnosis did you have to start dialysis? I guess my mind is at the point where there is no hope and I will progress to ESRF..I believe with the news I got on Thurs that reality has finally set in that I have lupus and the my kidneys pretty much suck!!! Any advice, suggestions, and or experiences would be greatly welcomed!!!!
 
Thanks

Amy

 

Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril, hydrochlorothiazide, Midrin, Ambien, Flexeril, Ultram, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 10/17/2009 10:13 AM (GMT -7)   
Amy,
   Hey girl!  I am sooo sorry you are at this point.  I know it is scarey and it took a while for reality to hit me too!  It actually took me about 8 years to progress to end stage renal failure and to go on dialysis.  I did massive amounts of steroids the first year, then progressed to cellcept and a lower dose steroids then cytoxan and steroids.  I have never done any other major treatment course.  I'm really not aware of anything else out there.  Of course, that doesn't mean it doesn't exist.  I'm praying that your rheumy and nephrologist can put their heads together and come up with something. 
     Remember Amy, don't lose hope.  This thing could turn around.  I was on dialysis and not being aggressively treated for my kidneys when they suddenly began to improve.  I am praying for you and I know others are.  I still have to take Procrit shots to help build red blood cells.  The hormone that stimulates your bone marrow to produce red blood cells is manufactured in the kidneys and that's why when you kidneys are failing you have difficulty with anemia.  (plus meds contribute)  Do be very careful about potassium!  It can be very dangerous. 
      Please keep me posted on your situation!  I hate Lupus and what it does to wonderful people like you!  Keep your chin up girl!  Love ya, Judy

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 10/22/2009 1:46 PM (GMT -7)   
Thank you Judy for the reply! I had my apt with my rhuemy today and she told me she is consulting with 2 dr's up at John Hopkins and then several doctors down at Emory to see if they have any suggestions. I will update more on the Kidney Forum...Everything is still the same as it was last time!!!

Amy

 

Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril, hydrochlorothiazide, Midrin, Ambien, Flexeril, Ultram, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 7:24 AM (GMT -7)
There are a total of 2,734,038 posts in 301,172 threads.
View Active Threads


Who's Online
This forum has 151305 registered members. Please welcome our newest member, walkingdeadgirl.
285 Guest(s), 7 Registered Member(s) are currently online.  Details
John_TX, Bucko, w0hll, blksteeda, Mustard Seed, docktahkay, iPoop


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer