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hating_that_pred
02-22-2010, 06:05 AM
My Lupus has become inactive for some time now which is obviously great news. But things arent as bright as they sound because of my on going nephrotic syndrome problem. I still suffer strong lethargy, feeling unwell, swelling in eyes and legs,plus pain in right kidney due to how much protein im passing, which is why i cannot lower my prednisone yet (the drug that is hell for me). It has been almost a year now and my protein still hasn't hit a stage where things are more managable. Ive basically been told my my nephrologist and a rhuematologist that it will improve after time. I am fully aware that I will probably leak too much protein for the rest of my life, however Im expecting a drop in my leaking protein sometime within the next 12 months which should dramatically improve things like: Lethargy,swelling, and a lower dose of Prednisone. Im pretty sure there isnt too much you can do to help a protein leak diet wise, or any other strategies. However this is the reason im writing this up to see if there is anything that can help a protein leak even slightly. I avoid too much salt but am not aware of to much else. Rituximab (an expensive drug that transfers into your blood through a drip) Ive heard has very positively helped some patients with Nephrotic Syndrome, plus my Nephrologist has considered using it 2 or 3 times. I dont know much about the topic so anyone that knows anything useful leave a comment.

18 year old Male diagnosed with Kidney Lupus,Nephrotic Syndrome at 17.

Saysusie
02-22-2010, 08:31 AM
One of the first things that we are told to do, when diagnosed with Lupus, is to reduce our intake of protein (such as red meats etc.). If our kidneys are already taxed by this disease, reducing protein in our diet can help to relieve some of the stress on our kidneys. Some say that taking large doses of Vitamin C helps (since vitamin C is filtered and "wasted" through the kidneys). Also, increasing carbohydrates is suggested. It is thought that, by doing this, it will also reduce the catabolism of proteins and prevent ketosis. Also, a regular vegetarian diet, which is high in complex carbohydrates, has also been suggested.
None of these suggestions are provided by doctors, however. So, it is important that you discuss these with your doctor before you decide to use them.

Perhaps someone else will be along with more information for you. I do hope that your protein leak is controlled soon.

Peace and Blessings
Namaste
Saysusie

capncrunch
02-22-2010, 09:43 AM
hey, i'm 20 years old right now, i have the same problem as you.
but there are drugs that does retain some protein such as predisone which you are taking, and some blood pressure pill i don't remember lol. but im not on these medicines anymore, im only on cellcept which is probably the medicine i ever had.

i leaked a lot of protein before, but since i lift weights i haven't been leaking as much. i've learned that lifting will break your muscles and it would be fixed by the protein that you intake, and get bigger.