Is there anything else other than Prednisone I can take?

[MissyClark]

I have been taking Prednisone for 2 months now. I am exhausted, my eyesite is going fast. I look like a Porky pigy from the neck up...not to mention I am so depressed and my husband just doesn't understand. He told me tonight he would be glad when I got in a good mood again. I'm not going to say what I told him. I am at stage 4 of FSGS. (Which I just found out I had a couple of months ago). I would like to know what happen to stage 1,2 and 3? It seems like I have to be my own doctor. He hasn't told me that I should have a special diet or how much water to drink. (I have always been told...drink drink...drink) Now I find out that is why I am retaining so much water and my ankles look like canteloupes. I do take water pills, but it doesn't seem to help all that much. My legs are so weak that I can barely walk for 5 minutes. If I do anything around the house I have to sit down twice as long just to rest up. My husband expects me to do everything that I have always done. I felt fine until I started taking these steroids. Is there anything else I can take?

[Beth Witten MSW ACSW]

I'm not a doctor and would encourage you to see a kidney specialist if you're not already seeing on? Did you ask your doctor what it meant that you had Stage 4 FSGS and what options you have to treat it and what you should do to stay in the best health possible? It's very important that you and your doctor develop a relationship in which he encourages (expects) you to ask questions and responds to them in a way that you can understand. If you ask a question and don't get a response or get a response that you can't understand, be honest with your doctor and ask again. You always have the right to interview and choose a different doctor if yours isn't expecting you to be a partner in your care.

I suspect what your doctor meant is that you have Stage 4 chronic kidney disease, but please verify this with him/her. If you have Stage 4 CKD, your kidneys are functioning at less than 30%. Has your doctor drawn blood and told you if you're anemic. Most people with 50% kidney function or less are. Anemia could make your legs weak. Your legs could also be weak if certain other blood chemistries are too high or too low. Some diuretics cause you to lose too much potassium. If so, this could make your muscles weak and could affect other muscles like your heart. Tell your doctor that your legs feel very week and ask if your potassium could be too high or too low. Always ask your doctor for a copy of your lab tests and if anything is flagged as too high or too low, ask what you can do to improve it.

You say you're retaining fluid. One of the things that could help this is to restrict sodium in your diet. Ask your doctor if you should do this and what your limit should be. If your doctor tells you to limit sodium, you'll not only need to limit the amount of salt you add to foods, but the amount of sodium that's in the cans or boxes of food that you eat or foods you eat out. Ask if you can speak with a renal dietitian. He/she can tell you what to limit and what is OK. The National Kidney Foundation has a brochure on diet for people with chronic kidney disease:
http://www.kidney.org/atoz/atozItem.cfm?id=95

You can also find information on kidney disease and treatment on Kidney School. This website has multiple modules including a module on kidney disease and the one on lab tests.
http://www.kidneyschool.org

Here's information on an organization for people with FSGS that has chapters that have information/support groups throughout the US:
http://www.nephcure.org/

I hope this information helps. Good luck!