Beth75 Please Read

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MizPiggy31
Regular Member


Date Joined Feb 2012
Total Posts : 114
   Posted 3/27/2012 10:16 AM (GMT -7)   
Hi Beth75,
 
I have been diagnosed with MCD and IgA Nephr. and Proteinuria.  The doctor has put me on the following meds;
 
lipitor (20 mg)-cholesterol
Omeprazole (20 mg)-gastro problems
Drisdol (50,000 units)-vitamin D
Predinsone (20 mg, 4 tablets a day)
Lovaza (1 gram)-fish oil
Calcium (600 mg)
Lisinopril (20 mg)-blood pressure
Baby asprin for blood clottin disorder
 
I am really scared about the prednisone.  Also, have you ever heard of a biopsy showling two types of kideny disease?
 
Any help you can give me would be appreciated.
 
Thanks,
 
MizPiggy31

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 3/28/2012 1:32 PM (GMT -7)   
Hi MizPiggy,
 
I haven't been on here in a while and was thinking about you so came here today.  The MCD goes into remission for most people and for those where it doesn't the research I have done, myself included it seems we don't lose kidney function but do still lose proteins, meaning it doesn't get any worse.  I had swelling for 7 years and was undiagnosed so I think that is why I have not reached remission. 
 
Unfortunately I don't know anything about IgA Nephropathy and two types of kidney disease, but a quick search seems to indicate that it is likely to not get worse when you get treatment.
 
From what I can tell so far it seems you should likely be able to control these with medications.  The medications you listed are standard for kidney disease except I don't know about Omeraprazole and the aspirin.
 
Prednisone SUCKS!!!! I'm not gonna lie, it is a necessary evil.  Mood swings, hot flashes, emotional roller coaster, more swelling, etc...  I highly recommend reading "Coping with Prednisone" I ordered it from Amazon.  That booked helped me deal with being on the drug and understand that the unease that the drug made me feel was normal and I was not crazy for feeling the way I did.
 
Coming off pred is another story, but I am doing great now been off of it for almost a year.  You'll really need to watch your salt especially w/the pred, anything with MSG, chinese food, salty soups will make you feel worse.  Once you modify your diet it will be easier. 
 
What has helped me: Think of what you can do, not what you can't do.  Try to be thankful for not having FSGS.  Take it one day at a time.  Crying is ok, it's what strong people do to relieve tension.  Think of the possibilities and do not dwell on the negatives.  You will get through this!!!  Keep a notebook of your meds and when changes are made.  Buy some albustix to check your proteins (cheaper on amazon).  Make sure you have the best Doctor you can (do the research!).  I wasted time with a nice Dr. but he had less experience than the one I have now.  Give yourself pep talks every day, find enjoyment wherever possible.  I read a ton of books (I like scifi ; ), helped me escape.
 
Please let me know if you have any other questions at all.  Feel free to contact me directly my email should be in my profile.
 
fyi, this is an autoimmune disorder. Luckily enough (sarcastic ; )  I have ulcerative colitis and the remicade I get for that helps my kidneys.  There are trials for FSGS with Humira.  FSGS is another type of kidney disease and Humira is similar to remicade in that they are both biologics. 
 
Let me know how things go, some people notice a dramatic difference in a couple of weeks, some it can take a couple of months and some have to the treatment another time to get it to stick.  Good luck with everything!!
 
Nephcure.org is a site about kidney disease.  I am Beth75 over there too.
 
 
 
 
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.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 3/28/2012 1:46 PM (GMT -7)   
also, I ate a banana a day to help w/the muscle cramps from the prednisone.
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 3/28/2012 3:42 PM (GMT -7)   
Hi Beth75,
 
Thanks for answering.  I am going to try and get the book on coping with prednisone.  I took my first pills today.  No real side effects except I got a real bad cramp in my leg at work.
 
I hate bananas but will do what I have to to get better.  Right now I am not sure when the doc is going to start to taper mine down but I go back in 4 weeks.  I will look up the sticks to test my protein didn't know I could do that at home.  My protein levels were super high. Good news is creatine and BUN levels are normal.
 
Thank you so much for the advice.  Will look you up on nephcure
 
MizPiggy31
 
 

MizPiggy31
Regular Member


Date Joined Feb 2012
Total Posts : 114
   Posted 3/28/2012 3:45 PM (GMT -7)   
Forgot the omzeprole is to combat the stomach issues that come with prednisone and the aspirn is because I tested positive for anti cardiolpin so Rhemy and Kidney doc say I have a blood clotting disorder.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 3/28/2012 3:47 PM (GMT -7)   
that is awesome that your bun and creatinine are fine, that is very important!! Tomato soup is good for potassium but high in sodium unless you have a trader joes or whole foods type store. The side effects may take a week or so to catch up to you, sorry!

take care!
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.

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 3/28/2012 7:20 PM (GMT -7)   
 
I ordered these back when I was testing my urine for blood and protein. Some what accurate but not accurate after they expire. The cheapest ones I listed but you can look around at the others listed on Amazon and pick the best for yoU!
Amy
Lupus Moderater


dialysis from lupus nephritis
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