Heidi Whitney
I'm a 32 year old woman with Glomerulonephritis Membraneous. I have lived with this disease since I was 18. I know that my particular type of GN is rare. Only about 100,00 people in the world have it and it afflicts mainly black males. I am not black and I am not a male so that makes me even more rare. I have been treated 2 times with a protocol involving Prednisone and Cloraambucil. The protocol is 6 months long. The first month they give you prednisone by IV for the first 3 days and then you take 60mg of the drug for the remaining days of the month. Then the next month you are given either clorambucil or cytoxin which are mild forms of chemotherapy for 30 days. These 2 forms of medicine are alternated for the 6 month duration. I don't know if your particular type of GN would respond to this treatment. The first time I had the treatment I was put into remission for about 3or 4 years and then it came back again. The next time I went through the treatment I got better but did not go into remission. My disease makes me "spill" a lot of protien in my urine making the urine foamy and causing edema in areas of my body. it also makes me very tired and lethargic. My disease is said to be idiopathic, meaning it comes and it goes. The odds are this for someone with my disease, one third will remit and never have to be bothered by it again. one third will neither get better or get worse, but stay the same. The last third will get progressively worse until end stage renal failure and transplant is needed. Right now I am taking a ace inhibitor blood pressure medicine to try and keep me stable. It is thought that the ace inhibitor keeps the kidneys from getting worse. My disease has also flared up in the last few months and my doctor is considering putting me back through the protocol again, however because this disease is so idiopathic were using a wait and see approach to see if my body can right itself without resorting to using the protocol. I hope this information was helpful. Please e-mail me if you have any questions.