Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 Hi Billie, Proteinuria does not reflect remaining kidney function. Some people spill very little protein right up until the end and other folks lose a lot of protein from the very beginning. The reason you want to get urine protein under control is to extend the useful live of the kidney. However, getting this under control will not reverse existing scarring. As Pierre reminded everyone recently, there are factors (namely immune deposition) other than proteinuria that contribute to renal decline. However, unlike immune deposition, which remains pretty uncontrollable, proteinuria can be controlled in some people to a certain extent. When you are down to 18% function, it's probably unlikely that you will regain a signifigant amount of function left - so the emphasis is on preserving what you have. Cy vintagecrazy2003 wrote: Once you loose down to 18% function is it possible if you lower the protein in your urine you could regain some kidney function with iga? I had the last neph. in my (6) Dr. group state that it is possible to regain back up to 45-50% but never 100%-the others never mentioned that before but this Dr. only saw me five minutes-my 24 hr urine came back as 1/2 gr protein per day after taking the cytoxan two weeks with the predisone when two months ago it was 3 grams a day so that is a big change but my creatitine was 2.9. What do you all think? Thanks Billie To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 Hi Billie, Proteinuria does not reflect remaining kidney function. Some people spill very little protein right up until the end and other folks lose a lot of protein from the very beginning. The reason you want to get urine protein under control is to extend the useful live of the kidney. However, getting this under control will not reverse existing scarring. As Pierre reminded everyone recently, there are factors (namely immune deposition) other than proteinuria that contribute to renal decline. However, unlike immune deposition, which remains pretty uncontrollable, proteinuria can be controlled in some people to a certain extent. When you are down to 18% function, it's probably unlikely that you will regain a signifigant amount of function left - so the emphasis is on preserving what you have. Cy vintagecrazy2003 wrote: Once you loose down to 18% function is it possible if you lower the protein in your urine you could regain some kidney function with iga? I had the last neph. in my (6) Dr. group state that it is possible to regain back up to 45-50% but never 100%-the others never mentioned that before but this Dr. only saw me five minutes-my 24 hr urine came back as 1/2 gr protein per day after taking the cytoxan two weeks with the predisone when two months ago it was 3 grams a day so that is a big change but my creatitine was 2.9. What do you all think? Thanks Billie To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 Hi Billie, Proteinuria does not reflect remaining kidney function. Some people spill very little protein right up until the end and other folks lose a lot of protein from the very beginning. The reason you want to get urine protein under control is to extend the useful live of the kidney. However, getting this under control will not reverse existing scarring. As Pierre reminded everyone recently, there are factors (namely immune deposition) other than proteinuria that contribute to renal decline. However, unlike immune deposition, which remains pretty uncontrollable, proteinuria can be controlled in some people to a certain extent. When you are down to 18% function, it's probably unlikely that you will regain a signifigant amount of function left - so the emphasis is on preserving what you have. Cy vintagecrazy2003 wrote: Once you loose down to 18% function is it possible if you lower the protein in your urine you could regain some kidney function with iga? I had the last neph. in my (6) Dr. group state that it is possible to regain back up to 45-50% but never 100%-the others never mentioned that before but this Dr. only saw me five minutes-my 24 hr urine came back as 1/2 gr protein per day after taking the cytoxan two weeks with the predisone when two months ago it was 3 grams a day so that is a big change but my creatitine was 2.9. What do you all think? Thanks Billie To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 Cy answered you quite well. At 18% it's more a game of how slow can you go rather than how much can you get back. You might see a bit of improvement if your function is being depressed by inflammation along with plain old scaring. You can see a slight rise when the inflammation is under control. It happened to me but we are talking like a 6-8% increase not the roughly 30% your doctor is saying you might gain back. I went from 35-37% up to about 45% function after starting prednisone treatment. So far, with the exception of severe temporary loss of function due to infection, I haven't come across anyone who has gained back that amount with treatment. Keeping the protein spill under control is going to help keep what function you have left going for a while longer. The prednisone and cytoxan will help with inflammation issues if there are any and you may see an increase in function due to the inflammation being controlled. Amy Sorry another question > Once you loose down to 18% function is it possible if you lower > the protein in your urine you could regain some kidney function > with iga? I had the last neph. in my (6) Dr. group state that it is > possible to regain back up to 45-50% but never 100%-the others > never mentioned that before but this Dr. only saw me five > minutes-my 24 hr urine came back as 1/2 gr protein per day after > taking the cytoxan two weeks with the predisone when two > months ago it was 3 grams a day so that is a big change but my > creatitine was 2.9. What do you all think? Thanks Billie > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 Cy answered you quite well. At 18% it's more a game of how slow can you go rather than how much can you get back. You might see a bit of improvement if your function is being depressed by inflammation along with plain old scaring. You can see a slight rise when the inflammation is under control. It happened to me but we are talking like a 6-8% increase not the roughly 30% your doctor is saying you might gain back. I went from 35-37% up to about 45% function after starting prednisone treatment. So far, with the exception of severe temporary loss of function due to infection, I haven't come across anyone who has gained back that amount with treatment. Keeping the protein spill under control is going to help keep what function you have left going for a while longer. The prednisone and cytoxan will help with inflammation issues if there are any and you may see an increase in function due to the inflammation being controlled. Amy Sorry another question > Once you loose down to 18% function is it possible if you lower > the protein in your urine you could regain some kidney function > with iga? I had the last neph. in my (6) Dr. group state that it is > possible to regain back up to 45-50% but never 100%-the others > never mentioned that before but this Dr. only saw me five > minutes-my 24 hr urine came back as 1/2 gr protein per day after > taking the cytoxan two weeks with the predisone when two > months ago it was 3 grams a day so that is a big change but my > creatitine was 2.9. What do you all think? Thanks Billie > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 Cy answered you quite well. At 18% it's more a game of how slow can you go rather than how much can you get back. You might see a bit of improvement if your function is being depressed by inflammation along with plain old scaring. You can see a slight rise when the inflammation is under control. It happened to me but we are talking like a 6-8% increase not the roughly 30% your doctor is saying you might gain back. I went from 35-37% up to about 45% function after starting prednisone treatment. So far, with the exception of severe temporary loss of function due to infection, I haven't come across anyone who has gained back that amount with treatment. Keeping the protein spill under control is going to help keep what function you have left going for a while longer. The prednisone and cytoxan will help with inflammation issues if there are any and you may see an increase in function due to the inflammation being controlled. Amy Sorry another question > Once you loose down to 18% function is it possible if you lower > the protein in your urine you could regain some kidney function > with iga? I had the last neph. in my (6) Dr. group state that it is > possible to regain back up to 45-50% but never 100%-the others > never mentioned that before but this Dr. only saw me five > minutes-my 24 hr urine came back as 1/2 gr protein per day after > taking the cytoxan two weeks with the predisone when two > months ago it was 3 grams a day so that is a big change but my > creatitine was 2.9. What do you all think? Thanks Billie > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 > Cy answered you quite well. At 18% it's more a game of how slow can you go > rather than how much can you get back. You might see a bit of improvement > if your function is being depressed by inflammation along with plain old > scaring. You can see a slight rise when the inflammation is under control. > It happened to me but we are talking like a 6-8% increase not the roughly > 30% your doctor is saying you might gain back. I went from 35-37% up to > about 45% function after starting prednisone treatment. So far, with the > exception of severe temporary loss of function due to infection, I haven't > come across anyone who has gained back that amount with treatment. > Keeping the protein spill under control is going to help keep what > function you have left going for a while longer. The prednisone and cytoxan > will help with inflammation issues if there are any and you may see an > increase in function due to the inflammation being controlled. > > Amy > Sorry another question > > > > Once you loose down to 18% function is it possible if you lower > > the protein in your urine you could regain some kidney function > > with iga? I had the last neph. in my (6) Dr. group state that it is > > possible to regain back up to 45-50% but never 100%-the others > > never mentioned that before but this Dr. only saw me five > > minutes-my 24 hr urine came back as 1/2 gr protein per day after > > taking the cytoxan two weeks with the predisone when two > > months ago it was 3 grams a day so that is a big change but my > > creatitine was 2.9. What do you all think? Thanks Billie > > > > > >Amy how long were you on the treatment for inflammation and did and do you know what caused the inflammation? All my bp meds were changed to see if that was causing the nephritis but really no way of knowing what caused it. Maybe it was all that starr fruit I ate last year including the seeds not knowing better. Thanks for the info. Billie > > > > To edit your settings for the group, go to our Yahoo Group > > home page: > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > To unsubcribe via email, > > iga-nephropathy-unsubscribe > > Visit our companion website at www.igan.ca. The site is entirely supported > by donations. If you would like to help, go to: > > http://www.igan.ca/id62.htm > > > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 > Cy answered you quite well. At 18% it's more a game of how slow can you go > rather than how much can you get back. You might see a bit of improvement > if your function is being depressed by inflammation along with plain old > scaring. You can see a slight rise when the inflammation is under control. > It happened to me but we are talking like a 6-8% increase not the roughly > 30% your doctor is saying you might gain back. I went from 35-37% up to > about 45% function after starting prednisone treatment. So far, with the > exception of severe temporary loss of function due to infection, I haven't > come across anyone who has gained back that amount with treatment. > Keeping the protein spill under control is going to help keep what > function you have left going for a while longer. The prednisone and cytoxan > will help with inflammation issues if there are any and you may see an > increase in function due to the inflammation being controlled. > > Amy > Sorry another question > > > > Once you loose down to 18% function is it possible if you lower > > the protein in your urine you could regain some kidney function > > with iga? I had the last neph. in my (6) Dr. group state that it is > > possible to regain back up to 45-50% but never 100%-the others > > never mentioned that before but this Dr. only saw me five > > minutes-my 24 hr urine came back as 1/2 gr protein per day after > > taking the cytoxan two weeks with the predisone when two > > months ago it was 3 grams a day so that is a big change but my > > creatitine was 2.9. What do you all think? Thanks Billie > > > > > >Amy how long were you on the treatment for inflammation and did and do you know what caused the inflammation? All my bp meds were changed to see if that was causing the nephritis but really no way of knowing what caused it. Maybe it was all that starr fruit I ate last year including the seeds not knowing better. Thanks for the info. Billie > > > > To edit your settings for the group, go to our Yahoo Group > > home page: > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > To unsubcribe via email, > > iga-nephropathy-unsubscribe > > Visit our companion website at www.igan.ca. The site is entirely supported > by donations. If you would like to help, go to: > > http://www.igan.ca/id62.htm > > > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 > Cy answered you quite well. At 18% it's more a game of how slow can you go > rather than how much can you get back. You might see a bit of improvement > if your function is being depressed by inflammation along with plain old > scaring. You can see a slight rise when the inflammation is under control. > It happened to me but we are talking like a 6-8% increase not the roughly > 30% your doctor is saying you might gain back. I went from 35-37% up to > about 45% function after starting prednisone treatment. So far, with the > exception of severe temporary loss of function due to infection, I haven't > come across anyone who has gained back that amount with treatment. > Keeping the protein spill under control is going to help keep what > function you have left going for a while longer. The prednisone and cytoxan > will help with inflammation issues if there are any and you may see an > increase in function due to the inflammation being controlled. > > Amy > Sorry another question > > > > Once you loose down to 18% function is it possible if you lower > > the protein in your urine you could regain some kidney function > > with iga? I had the last neph. in my (6) Dr. group state that it is > > possible to regain back up to 45-50% but never 100%-the others > > never mentioned that before but this Dr. only saw me five > > minutes-my 24 hr urine came back as 1/2 gr protein per day after > > taking the cytoxan two weeks with the predisone when two > > months ago it was 3 grams a day so that is a big change but my > > creatitine was 2.9. What do you all think? Thanks Billie > > > > > >Amy how long were you on the treatment for inflammation and did and do you know what caused the inflammation? All my bp meds were changed to see if that was causing the nephritis but really no way of knowing what caused it. Maybe it was all that starr fruit I ate last year including the seeds not knowing better. Thanks for the info. Billie > > > > To edit your settings for the group, go to our Yahoo Group > > home page: > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > To unsubcribe via email, > > iga-nephropathy-unsubscribe > > Visit our companion website at www.igan.ca. The site is entirely supported > by donations. If you would like to help, go to: > > http://www.igan.ca/id62.htm > > > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Hi Billie, That is great news that your protein has dropped by half! I think the general rule is that once your creatinine hits a certain level, and I believe it is 2.5 or so but I am not positive on the level, it is a matter of when your kidneys give out, not if they give out. As others have written, the objective becomes trying to preserve the renal function you have left for as long as possible. You are certainly going in the right direction by getting your protein to go down that much. Keep up the trend :-) In a message dated 7/6/2004 3:02:11 PM Pacific Daylight Time, vintagecrazy2003@... writes: > 1/2 gr protein per day after > taking the cytoxan two weeks with the predisone when two > months ago it was 3 grams a day so that is a big change but my > creatitine was 2.9. What do you all think? Thanks Billie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Hi Billie, That is great news that your protein has dropped by half! I think the general rule is that once your creatinine hits a certain level, and I believe it is 2.5 or so but I am not positive on the level, it is a matter of when your kidneys give out, not if they give out. As others have written, the objective becomes trying to preserve the renal function you have left for as long as possible. You are certainly going in the right direction by getting your protein to go down that much. Keep up the trend :-) In a message dated 7/6/2004 3:02:11 PM Pacific Daylight Time, vintagecrazy2003@... writes: > 1/2 gr protein per day after > taking the cytoxan two weeks with the predisone when two > months ago it was 3 grams a day so that is a big change but my > creatitine was 2.9. What do you all think? Thanks Billie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Hi Billie, That is great news that your protein has dropped by half! I think the general rule is that once your creatinine hits a certain level, and I believe it is 2.5 or so but I am not positive on the level, it is a matter of when your kidneys give out, not if they give out. As others have written, the objective becomes trying to preserve the renal function you have left for as long as possible. You are certainly going in the right direction by getting your protein to go down that much. Keep up the trend :-) In a message dated 7/6/2004 3:02:11 PM Pacific Daylight Time, vintagecrazy2003@... writes: > 1/2 gr protein per day after > taking the cytoxan two weeks with the predisone when two > months ago it was 3 grams a day so that is a big change but my > creatitine was 2.9. What do you all think? Thanks Billie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Hi Billie, Sorry I missed this question earlier. Actually I'm still on prednisone...in the process of weaning off of it. The neph felt the inflammation was being caused by the 3+ grams of protein I was spilling and possibly from a constant infection in my system somewhere. My white blood count was constantly elevated until I went on a series of mass doses of antibiotics, my last set of labs showed a normal white count for the first time in almost a year. I started prednisone treatment back on Sept 30, 2003 and have been slowly weaned down to my current 7.5mg. I'll be on it for another few months so nearly a year of treatment by the time I'm done. I'm getting a bit nervous about going off the pred now (it's one of those drugs you fear going on but when you get great results from the stuff you fear going off it. I'm so fickle). I'm worried about things starting to rapidly decline once off the stuff as I have the aggressive form of IgAN, but I figure if that happens I had a year of stability that I wouldn't have had without the pred. I know things could stay stable for a long time to come but I also know things could progress quickly again....my family and I are preparing for the worst and hoping for the best. ) Amy > Amy how long were you on the treatment for inflammation and > did and do you know what caused the inflammation? All my bp > meds were changed to see if that was causing the nephritis > but really no way of knowing what caused it. Maybe it was all that > starr fruit I ate last year including the seeds not knowing better. > Thanks for the info. Billie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Awww Amy, you're not fickle, it's natural to worry about the pred chagnes...but any time the prednisone dose gets changed, it does very funny things to your system. I can attest to it when I had my dose adjusted from 40 to the current 30 mg. That was the only time all those strange side effects came into play for me. I hope the best for you too! Sophia > Hi Billie, > Sorry I missed this question earlier. Actually I'm still on > prednisone...in the process of weaning off of it. > The neph felt the inflammation was being caused by the 3+ grams of protein I > was spilling and possibly from a constant infection in my system somewhere. > My white blood count was constantly elevated until I went on a series of > mass doses of antibiotics, my last set of labs showed a normal white count > for the first time in almost a year. I started prednisone treatment back on > Sept 30, 2003 and have been slowly weaned down to my current 7.5mg. I'll be > on it for another few months so nearly a year of treatment by the time I'm > done. I'm getting a bit nervous about going off the pred now (it's one of > those drugs you fear going on but when you get great results from the stuff > you fear going off it. I'm so fickle). I'm worried about things starting > to rapidly decline once off the stuff as I have the aggressive form of IgAN, > but I figure if that happens I had a year of stability that I wouldn't have > had without the pred. I know things could stay stable for a long time to > come but I also know things could progress quickly again....my family and I > are preparing for the worst and hoping for the best. ) > > Amy > > > Amy how long were you on the treatment for inflammation and > > did and do you know what caused the inflammation? All my bp > > meds were changed to see if that was causing the nephritis > > but really no way of knowing what caused it. Maybe it was all that > > starr fruit I ate last year including the seeds not knowing better. > > Thanks for the info. Billie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Awww Amy, you're not fickle, it's natural to worry about the pred chagnes...but any time the prednisone dose gets changed, it does very funny things to your system. I can attest to it when I had my dose adjusted from 40 to the current 30 mg. That was the only time all those strange side effects came into play for me. I hope the best for you too! Sophia > Hi Billie, > Sorry I missed this question earlier. Actually I'm still on > prednisone...in the process of weaning off of it. > The neph felt the inflammation was being caused by the 3+ grams of protein I > was spilling and possibly from a constant infection in my system somewhere. > My white blood count was constantly elevated until I went on a series of > mass doses of antibiotics, my last set of labs showed a normal white count > for the first time in almost a year. I started prednisone treatment back on > Sept 30, 2003 and have been slowly weaned down to my current 7.5mg. I'll be > on it for another few months so nearly a year of treatment by the time I'm > done. I'm getting a bit nervous about going off the pred now (it's one of > those drugs you fear going on but when you get great results from the stuff > you fear going off it. I'm so fickle). I'm worried about things starting > to rapidly decline once off the stuff as I have the aggressive form of IgAN, > but I figure if that happens I had a year of stability that I wouldn't have > had without the pred. I know things could stay stable for a long time to > come but I also know things could progress quickly again....my family and I > are preparing for the worst and hoping for the best. ) > > Amy > > > Amy how long were you on the treatment for inflammation and > > did and do you know what caused the inflammation? All my bp > > meds were changed to see if that was causing the nephritis > > but really no way of knowing what caused it. Maybe it was all that > > starr fruit I ate last year including the seeds not knowing better. > > Thanks for the info. Billie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Awww Amy, you're not fickle, it's natural to worry about the pred chagnes...but any time the prednisone dose gets changed, it does very funny things to your system. I can attest to it when I had my dose adjusted from 40 to the current 30 mg. That was the only time all those strange side effects came into play for me. I hope the best for you too! Sophia > Hi Billie, > Sorry I missed this question earlier. Actually I'm still on > prednisone...in the process of weaning off of it. > The neph felt the inflammation was being caused by the 3+ grams of protein I > was spilling and possibly from a constant infection in my system somewhere. > My white blood count was constantly elevated until I went on a series of > mass doses of antibiotics, my last set of labs showed a normal white count > for the first time in almost a year. I started prednisone treatment back on > Sept 30, 2003 and have been slowly weaned down to my current 7.5mg. I'll be > on it for another few months so nearly a year of treatment by the time I'm > done. I'm getting a bit nervous about going off the pred now (it's one of > those drugs you fear going on but when you get great results from the stuff > you fear going off it. I'm so fickle). I'm worried about things starting > to rapidly decline once off the stuff as I have the aggressive form of IgAN, > but I figure if that happens I had a year of stability that I wouldn't have > had without the pred. I know things could stay stable for a long time to > come but I also know things could progress quickly again....my family and I > are preparing for the worst and hoping for the best. ) > > Amy > > > Amy how long were you on the treatment for inflammation and > > did and do you know what caused the inflammation? All my bp > > meds were changed to see if that was causing the nephritis > > but really no way of knowing what caused it. Maybe it was all that > > starr fruit I ate last year including the seeds not knowing better. > > Thanks for the info. Billie Quote Link to comment Share on other sites More sharing options...
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