You have surely gotten this message by now, but wanted to alert you to the use of Fish Body Oil. It has been shown in many studies to reduce the long term degeneration of this disease. I too have the disease (found it at 30, am now 40). Also, low or moderate use of dieuretics (coks, caffein, coffee, etc.) and protein will lower the load on the kidneys.

face=Verdana akendrick@secor.com

Great Post. I too have the diesase. It is aactually rather common in men. I was diagnosed at 30, and am now 40. I too am taking Fish Body Oil. I'll look up the Hectrol. Keep me posted (use my e-mail) of any new info.

Thanks again.

face=Verdana akendrick@secor.com

Hi there!
Our 17 year old daughter has had the same diagnosis and today is the first day we are searching the internet for information.

Could you please forward any information on IGA Nephritis that you may receive.

Thank you

face=Verdana dixons@dccnet.com

Hello. I don't want to sound insensitive but my advice would be to try not to worry. I was diagnosed with IgA nephritis at age 14 and am now 34 and I believe in pretty good health. In my teens I went through the fortnightly trips to the hospital where they took my blood and urine, did a radioactive scan, the biopsy etc etc and different doctors kept saying "yes, you've still got IgA nephritis, please come back in two weeks" I know they were trying to help and I thank them, but they did no good. Eventually I just stopped going. Fortunately and unbelievably while studying in Heidelberg, Germany through coincidence, or not, I had a few appointments at a hospital with a Doctor who it turned out was the world's foremost expert in this disease. A very busy and distinguished professor, he sat down and chatted away to me and even got down one of his old books from the shelf and left me to make photocopies of pages referring to IgA nephritis. The bottom line was that, as others have said here, there is no cure only potential management with steroids. He however did say that a certain proportion got worse, some stayed the same and some got better with remission. I decided at that time that a) I didn't need to visit a doctor about it again (baring unforseen circumstances) and B) I was in the third class. I didn't decide to bury my head, I avidly do my own research, just that I would manage the disease by myself. As the Chinese say "A person with one disease will live longer than someone with no diseases".
I've been vegetarian since I was 19 years old and mostly vegan. I read once that milk and cheese and excessive protein is hard work for the kidneys. I do drink alcohol in moderation but no carbonated drinks for the same reason as milk. I found out that very heavy exercise is stressful for the condition and so I have done yoga since my early twenties. Basically I've always used it as an early warning system i.e. if my urine turns a little darker it indicates an infection of some sort, usually a cold.I don't mean to be glib, just that I tried to use it and keep positive rather than focusing on it. I have the deepest sympathies for someone whose symptoms are more severe.
What I've learned is that if my body energy gets low through stress, or I get a cold or I over indulge than I can expect mild bachache occasionally and or darker urine. So I try to keep healthy. Apples, onions are anti-nephritic. You'll find just eating a breakfast of apples will clear your urine. So fruit for breakfast is good. Drink a lot of water. Try to avoid colds by keeping the bloodstream more basic. (lots of fruit and veggies/lemon water etc).**(see also the work of Edgar cayce)**Lots of garlic. Spices are also good to keep colds away. The spice "cloves" are especially good. I eat cloves and they seem to protect me from colds.
Try to find ways to reduce stress, daily meditation etc. According to Chinese medicine Nephritis is linked to over-thinking and worrying--too much energy in the head caused by too little energy in Kidneys. I would seriously recommend finding a good oriental doctor and getting regular accupuncture. Unfortunately in the West, at least where I was from stuff like accupuncture was a little too exotic or strange, thank goodness that's changing although it's a pity it is expensive. I live in South Korea presently where accupuncture is so normal and very cheap (1 pound, 50 pence for a full check up!) Edgar Cayce also mentioned osteopathic or chiropractic treatments for lumbar vertebrae to help nerve function and circulation to the kidneys. If you want to go with the steroids then fair enough but I would say at least consider supplementing with complementary approaches and natural healing modalities. Water melon seed tea is reported to be a kidney tonic as are adjuki beans.
I guess I always held the attitude of not focusing on it, expecting my body to take care of it and expecting to be healed. Go vegetarian and stay away from dairy. Drink lots of water and eat a balanced diet. Never expect/wait for your kidneys to deteriorate or expect dialysis. Whatever you hold in your mind will eventually come to the body. Don't let anyone program your outcome.
If it happens then it happens and you'll deal with it then, but personally I believe that you can prevent it from happening by not concentrating on being sick. That's what works for me, but we're all different. Just follow your own intuition. God bless and good luck.