What does partial response to meds really mean?

• By johnh
• Posted May 10, 2008 at 9:25 pm

I see you posted this awhile ago with no reply. Those are good questions for the pediatric nephrologist. One of the ways my doctor feels certain I have MCD and not FSGS is that I do respond, 7 or 8 relapses, to prednisone. My doctor says FSGS is usually more resistant. My doctor considers remission when I get down to "trace" levels. .9 g is not trace. It is out of nephrotic range, at least for adults, but the lesions are still present. I have tapered off before without really having whacked my levels down far enough and the disease comes right back and prolongs the whole prednisone treatment from 3 months to 6 months. When I first got this in 2000 I had trouble managing it, I would not notice symptoms until I was so nephrotic and my abdomen so swollen that oral medication couldn't be absorbed. Now I catch things much earlier. It is a disease I have learned to live with. My goal this relapse is to stay calm about it, not to dwell on it too much, enjoy life and avoid eating binges. I hope things go well for your son.

• Reply
• Report problem

• By Jenny1
• Posted May 12, 2008 at 10:55 am

I was originally diagnosed with MCD in 1986 and then with FSGS a year later. I was also sterioid resistant, and never went into total remission. Doctors have always said I was in "partial remission" like your son. From what I understand it to mean is that the protein levels are below nephrotic range, but higher then trace. So, basically, there will always be protein spillage (unless he does go into remission) and he'll have to deal with the side affects of it (for me it's swelling in the legs and fatigue), but the progression of the disease has been slowed and your son should be able to have a relatively normal life. I hope this helps...

• Reply
• Report problem

• By melj
• Posted May 12, 2008 at 1:24 pm

Thanks for your response and your perspective. Staying calm and not dwelling on his disease are good goals for dealing with this illness. My son doesn't have any swelling so it makes things a little easier for us. We still watch what he eats but I was a bit of a health nut before he was diagnosed. If you hear of anyone else who doesn't have edema, let me know. This seems to be more unusual according to the nephrologist and also an indicator of a poorer outcome. But, we take this one step at a time. I did post a discussion asking if anyone had nephrotic syndrome without edema but got no responses. Thanks again and good luck with your progress!

• Reply
• Report problem

• By melj
• Posted May 12, 2008 at 1:36 pm

Thanks for your response. It is encouraging to hear from someone who has been dealing with it for so long and is doing so well. My son hasn't had edema yet so that makes it a littler easier to deal with.

• Reply
• Report problem

Add to the discussion