Really, Two types of Kidney Disease!!!!!!

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MizPiggy31
Regular Member


Date Joined Feb 2012
Total Posts : 114
   Posted 3/27/2012 7:05 AM (GMT -7)   
Hello All,
 
I am new to the boards.  I had to go and see a nephrologist because I was spilling protein in my urine.  Well I had a biopsy done and got my results yesterday.  Good New it's not Lupus (positive ana once).
 
Bad news biopsy show both minimal change disease and IgA Neph. and proteinuria.  Really,  didn't evern know you could have more than one kidney disease at a time.  Not sure what will happen now.  After reading up on both the outcome is different for both.
 
Doctor started me on like 8 meds.  Predinsone (highest dosage you can have), cholestrol meds, calucium, Fish Oils, Bloop Presussure Meds, nexium and low-dose asprin (blood clotting disroder).
 
Can anybody help me to wrap my mind around this?  I have to go back in 4 weeks for blood testing and 24 hour urine sample.  Really scared about the predinsone (haven't heard good things about the side effects).
 
Any advice is welcomed.

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 3/27/2012 10:40 AM (GMT -7)   
Hey girl! I have porteinuria and something else (forgot the name now.) Proteinuria is very common and usually treated with Lisionpril. It has been shown to reduce the amount of protein leaking outta the kidneys. From a breaf look up of IgA, it looks that it also causes proteinuria, which means they are probably related. Same as Lupus nephritis causing the many different kidneys problems it does. (glad to hear it is not lupus by the way)

I was started on 1000mg 3 days in a row of Solumedrol( prednisone) and then put on 80mg orally for several months. How long will you stay on pred? Do you know when you can start tapering? I have been on pred for 5 years, all high doses. The main advice I can give you is to stay away from carbs. Your body will crave them. Try to use fruits and veggies when your body is telling you it's hungry.

Prednisone is a awesome and terrible drug. To be honest, it saved my life and saved me from dialysis for a long time. your doctors will moniter you for side effects through blood, things you report, and things they obsurb. Do you have any specific questions??
Amy
Lupus Moderater


dialysis from lupus nephritis

MizPiggy31
Regular Member


Date Joined Feb 2012
Total Posts : 114
   Posted 3/27/2012 11:28 AM (GMT -7)   
Hi Aims,
 
Thanks for answering.  Doc has me on the following;
 
lipitor (20 mg)
Omeprazole (20mg)
Drisdol (50,000 unit)
Prednisone (20 mg, 4 tablets a day)
Lovaza (1 gram)
Calcium (600 mg)
Lisinopril (20 mg)
 
He did not tell me how long I would have to be on the prednisone but I do go for blood work and to see the doc in 4 weeks.  He told me I would probably have more specific questions at that time and I probably would not like him, lol. 
 
I think my main concern is how the mininmal change and IgA effect the kidney together.
 
 
 

MizPiggy31
Regular Member


Date Joined Feb 2012
Total Posts : 114
   Posted 3/27/2012 11:29 AM (GMT -7)   
Aims forgot they both said I could still be suscptable (sp.) to lupus in the future.
 

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 3/27/2012 3:35 PM (GMT -7)   
oh yes, I hated my doc for a long time. I gained 100 pounds from pred and he had me on cellcept which caused acne and major depression. Now we have a great relationship. I would never change doctors for anything. He is awesome. Just know we are here if you have questions!
Amy
Lupus Moderater


dialysis from lupus nephritis

MizPiggy31
Regular Member


Date Joined Feb 2012
Total Posts : 114
   Posted 4/3/2012 1:51 PM (GMT -7)   
Hi everyone,
 
I have been on the prednisone and other meds for a week now.  I find myself eating or snacking during the day and I am home for a week and I eat more when I am home than when I am at work.  I can see now that I am going to have to get control of this hunger or find a way to cope with it.
 
I am feeling good except I have swelling in my feet and ankles.  Not sure if this is the kidneys or a side effect of the prednisone.  I have been writing down questions to ask my doctor when I go back.
 
If anyone has any coping techniques or ideas I can use to supress the hunger, it is greatly apprecited.
 
Connie

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 4/4/2012 12:38 PM (GMT -7)   
The pred made me swell a lot more, which I felt was the opposite of what it should do. I think it does that to some people, if you travel on a plane, I recommend compression stockings.

The food craving is terrible. I put on 15 pounds, many people put on much more pred weight. I was also on it for 4 years for my ulcerative colitis too.

hard candies, popcorn (low salt) and raw veggies w/low cal dressing helped me. However, I never was able to feel satisfied, friken pred!
UC Pancolitis: dx'd 2000; Remicade since 4/25/11, every 8 weeks. Kidney Disease (Minimal Change Disease): dx'd 2007 caused by 5ASA's (thank you sulfsalazine, lialda and asacol). Current meds: Remicade & prenatal vitamin. I feel better than I have in years being off the ton of medication I was on before.

MizPiggy31
Regular Member


Date Joined Feb 2012
Total Posts : 114
   Posted 5/18/2012 9:46 AM (GMT -7)   
Update:
 
Hi Guys,
 
Been on meds for about 6 weeks now and the prednisone has me eating.  I gained 16 pounds so far.  My face is swollen and starting to take that moon shape. 
 
Good News:  I start to taper down 5 mg every three days starting May 22nd and I am out of this "episode" with my kindey's.
 
Doc did tell me that my diseases can relapse and do so frequently so I have to do urine test at home and if the protein rises call the doc immediately.
 
Thanks for all the support and advice, especially Aims.
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