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Author Topic: Lupus????  (Read 2394 times)
Annig83
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« on: May 14, 2012, 06:20:41 PM »
I had posted about this on my other topic about blisters, but I really wanted some feedback...About 6 years ago I was diagnosed with RA (Rheumatoid Arthritis), after being pregnant with my son it was in "remission" until about a month ago, I started noticing swelling in my ankles, and some joint pain, along with the sores on my feet, headaches, fever for no reason, etc.... I was worried about Lupus, because I started noticing a sensitivity to the sun too... I posted on here about a weird rash on my arm back in the summer last year.. my Rhuematologist at that time gave me a steroid injection and it disappeared... I didn't think anything of it at that time...

I got a call from my Rheumatologist today and he told me that my ANA was positive and there was a positive protein as well (which I've never had before)...he said there is a very very very probable chance that I have lupus, :'( and I have to have some more blood tests tomorrow to confirm... :banghead;

Is there anyone else here who has Lupus...also will this affect my chances of getting a transplant?  I know Lupus affects the kidneys... what are my treatment options?  I'm so bummed... everything was going so well, I've been stable on D for a year (Wednesday will be my one year anniversary on D), and now this... it seems like everytime I have good stuff going on for me, another disease comes up... ::)
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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
Lillupie
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wedding 12-10-11

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« Reply #1 on: May 14, 2012, 07:46:13 PM »
yes I have had lupus since I was 16, but I Have also been in remisson since then too. It did attack my kidneys. THey usually give you steroids, well they did back in 1999.

Let us know what happens.
Lisa
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
jeannea
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« Reply #2 on: May 14, 2012, 07:48:02 PM »
That's a tough diagnosis. I know very little about it. I had a friend who was being checked for lupus and I remember seeing articles that mentioned lupus patients getting a transplant. So there must be hope. But I don't know details. I'll just send hugs.  :grouphug;
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noahvale
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« Reply #3 on: May 14, 2012, 07:53:18 PM »
^
« Last Edit: September 17, 2015, 02:32:32 AM by noahvale » Logged
Annig83
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« Reply #4 on: May 14, 2012, 08:03:43 PM »
OHHH! Thank you guys!  I feel so relieved after reading your posts... I will let everyone know what happens :)
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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
Annig83
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« Reply #5 on: May 23, 2012, 09:44:28 PM »
 :bandance; :bandance; :bandance; :bandance; :bandance; :bandance;

NO LUPUS!!! I am so relieved.  Apparently, I do have some type of autoimmune disease, similar to RA/Sjorgins Syndrome (Sp?).  As of now the doctor says my lab tests are pretty stable, however, my SED rate is really high...I got bad news in spite of the good news that there is no Lupus.  I had ankle surgery back in January and had to have a cadaver tendon placed.  They think I have an infection of some sort in the tendon (it's so small of an infection that I haven't really been sick).  If there is one, I have to have ankle surgery again, to have it removed... if it's not one thing it's another... at least this can be fixed...I'm glad that I don't have to worry about another debilitating disease! 

Thank you all for your info.  it made me feel so much better about everything!  :thx;
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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
brenda seal
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« Reply #6 on: May 24, 2012, 02:31:49 AM »

Annie , That is good news , VERY good news , I am happy for you .
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jeannea
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« Reply #7 on: May 24, 2012, 12:58:14 PM »
That is a fascinating result. I'm glad you don't have lupus.
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Big E
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« Reply #8 on: May 25, 2012, 10:31:09 AM »
 :cheer:  :yahoo;  :clap; :cuddle; :bandance;
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PKD diagnosed June 1996
Started in-center hemodialysis May 2010
MomoMcSleepy
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My son Roddy McSleepy at 6 months! sry pic sidewz
« Reply #9 on: May 25, 2012, 11:19:31 AM »
Oh I'm  so glad, very good news!  Hopefully they manage your disease well.  Sorry about your tendon. 
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35 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
Howard the Duck
gothiclovemonkey
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« Reply #10 on: May 27, 2012, 01:33:53 PM »
Very happy to hear its not lupus!
My mother had RA and Lupus!  (among diabetes, pancretitis, and heart disease...)
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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
TX listed 8/1/11 inactive
LISTED ACTIVE! 11/14/11 !!!
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