Posted 3/28/2012 3:32 PM (GMT -6)
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.