Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 Hi Tim, Welcome to the board. I was diagnosed in October of '03 through biopsy. Back in '03 my labs were pretty bad. I was nephrotic. My nephrologist placed me on prednisone and a lot of other meds to try and slow what seemed like a rapid progression. After of few months, my lab values were actually worse. At that point my neph weaned me off of the prednisone and placed me on an imuno-suppresant drug called CellCept. He also upped my intake of fish oil to 8 capsules per day. It worked....my protein spill reduced significantly and my creatinine was in the normal range as of June '04. I get my next set of labs done the end of June. There really aren't any cut and dry answers with this disease. Some people reach ESRD a lot quicker than others and some may not reach it all. What sort of meds are you taking and what do your labs look like? PS We're neighbors - I live in Olympia area :-) Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 Hi Tim, Welcome to the board. I was diagnosed in October of '03 through biopsy. Back in '03 my labs were pretty bad. I was nephrotic. My nephrologist placed me on prednisone and a lot of other meds to try and slow what seemed like a rapid progression. After of few months, my lab values were actually worse. At that point my neph weaned me off of the prednisone and placed me on an imuno-suppresant drug called CellCept. He also upped my intake of fish oil to 8 capsules per day. It worked....my protein spill reduced significantly and my creatinine was in the normal range as of June '04. I get my next set of labs done the end of June. There really aren't any cut and dry answers with this disease. Some people reach ESRD a lot quicker than others and some may not reach it all. What sort of meds are you taking and what do your labs look like? PS We're neighbors - I live in Olympia area :-) Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 Hi Tim, Just wanted to welcome you to the list. I think you put your finger right on it, when you said it make you feel less alone. I know for us, this list has been a real lifeline. If you haven't already, check out our companion web site www.igan.ca There's tons of information about IgAN in particular and renal disease in general that you might find useful With regard to your question: there are lots of folks out there whose disease remains stable for years and years - sometimes even without treatment. My son's labs probably aren't relevant (he doesn't have IgAN, but a similar, more aggressive disease). That being said, he's three years post diagnosis and is reasonably stable. Cy hello Im new > Hello, Im new to this site and am glad to see that there are people > getting involved. It makes you feel like your not alone. Im from > Seattle WA, 33 years old and was told I had IGAN in December of 04 by > a Kidney Biopsy. A question for anyone, Are there people out there > that are keeping your disorder in check for years and years? Can you > get your Labs stablized using current treatments. If so, would you > share your story and LABS and how long you have been stablized? > Thanks Tim. > > > > > > > > > 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 May 27, 2005 Report Share Posted May 27, 2005 Hi Tim, Welcome to the group, I'm glad you found us. I'm sorry to hear of your diagnosis...how do your labs look right now? I'm one of the ones in the rapidly progressing group though aggressive treatment with prednisone and good b/p management has kept me fairly stable for the past 20 months. I went from normal labs to roughly 35% kidney function in less than 6 months. I was 34 when I was diagnosed in Sept '03. My creatinine was 2.3, my b/p was 173/116, and I was spilling nearly 4g/24hrs of protein in my urine. I was nephrotic and sliding downhill very fast. I was started on prednisone at high doses along with an ACE inhibitor and fish oil. The prednisone has brought my protein spill down to 200mg/24hrs which helped ease the nephrotic syndrome and, besides my creatinine levels, my labs are all in normal ranges now. The prednisone also reduced the inflammation in my kidneys and in doing so brought my function up to about 45% for a short while. I've been having some problems as of late and a spot check on my creatinine showed me at 2.5, I'm going to be retested on the 3rd to see if I'm back on the downhill slide again. The most important factors are to keep your b/p under control, get any high urine protein spills down as far as possible, stay in good physical shape so your body isn't working against your kidneys, and keep your doctors appointments so they can get on top of things quickly. Many people with IgAN live their entire lives with just a few extra lab visits, a few extra pills to take, and a few more doctors visits a year. Even when you hit end stage renal failure you aren't looking at a death sentence, just a change of life sentence. It truly is a survivable disease. Welcome again to the group. Amy G. hello Im new Hello, Im new to this site and am glad to see that there are people getting involved. It makes you feel like your not alone. Im from Seattle WA, 33 years old and was told I had IGAN in December of 04 by a Kidney Biopsy. A question for anyone, Are there people out there that are keeping your disorder in check for years and years? Can you get your Labs stablized using current treatments. If so, would you share your story and LABS and how long you have been stablized? Thanks Tim. 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 May 28, 2005 Report Share Posted May 28, 2005 Hi Tim, A very warm welcome to you! Sorry you had to find your way here by being diagnosed with IgAN though. My story is that I have had symptoms of IgAN since my young teens, not exactly sure what year. I had two biopsies along the way and was conclusively diagnosed in 1997 but I am positive I have had IgAN since the early 70s. So, somewhere around 30 years for me. My creatinine stayed pretty stable around 1.1 or 1.2 for about 25 years. I have really just had problems since around 2000 and am currently getting near needing intervention at 16% function. The only treatment I ever had was ACE Inhibitors up to the last 5 years. Now I take many medications, and I think 6 of those a day are for BP which became harder to manage the past few years. As Pierre said in his response, keep a close eye on your blood pressure and that will help to protect the kidney function you do have. All the best to you and welcome again, In a message dated 5/27/2005 9:15:24 A.M. Pacific Daylight Time, firedept243@... writes: Hello, Im new to this site and am glad to see that there are people getting involved. It makes you feel like your not alone. Im from Seattle WA, 33 years old and was told I had IGAN in December of 04 by a Kidney Biopsy. A question for anyone, Are there people out there that are keeping your disorder in check for years and years? Can you get your Labs stablized using current treatments. If so, would you share your story and LABS and how long you have been stablized? Thanks Tim. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 Welcome to the group, Tim. It's hard to answer questions about stability. It kind of depends how we define stability and how long we're talking about. You can read my IgAN story on the " About us " page of www.igan.ca , but just to summarize... I started dialysis when I was 49 (going on 3 years ago). I was first diagnosed with microscopic blood in my urine when I was 23 or 24. Then came protein. However, for the first 12 years or so, I had no other symptoms, and I had normal kidney function. So, I could say I was totally stable for 12 years. Then came the high blood pressure, and my kidney function declined very slowly but steadily from that point on. But I never had problems with heavy proteinuria. It was always just mild, and sometimes up in moderate territory. In terms of serum creatinine during this period, two lab tests taken as much as a year apart wouldn't have shown much change, so, I could easily have been said to be " stable " during that time. However, little by little, my kidney function declined over the years, until I finally ran out of it, that is, I reached the 10% level and started dialysis. Altogether, it took 25 years from the discovery of the blood in my urine until I had to start dialysis. So, my IgAN was apparently stable for many, many years. I did nothing for this. No diet, no pills of any kind, until I had to start taking high blood pressure medication. This is the only treatment I ever had. Now, would I have lasted even longer before dialysis if I had had more aggressive treatment? Possibly (although aggressive treatment just wasn't done most of the decades I had IgAN, because it was considered to be a fairly benign kidney disease). This is something that can't be answered. However, I don't know what kind of shape I would be in now if I had been on years of oral steroids and other immune system suppressing drugs. I'm on dialysis now, but I'm pretty healthy for my age otherwise - so far, anyway, and, for most of those 25 years leading up to dialysis, I had a pretty normal life, healthwise. Nobody would have known I had any kidney disease at all except from lab tests. There are other people in the group with even longer longevity with IgAN who aren't on dialysis yet. Some people seem to have all kinds of problems early on, and others seem to just plug along without too much bother until they finally run out of kidney function decades later. As I say on the website, it's a very variable disease, but we all have a clear diagnosis of IgAN via biopsy. But to answer your question specifically, I did keep the disease in check for years and years (for the better part of 20 years), or rather, the disease kept itself in check - because I really did nothing for it except that I did keep physically fit, mostly via walking and cycling, and squash/racquetball. I eventually had to abandon racquet sports because it was causing knee problems from the stress of sideways motion on the court, but I still walk and cycle regularly. Whatever you do though, you absolutely must keep tabs on blood pressure, and keep it in under very good control if and when it starts creeping up. At this time, the most proven thing about IgAN and really, any kind of glomerulonephritis, is that blood pressure meds of the ACE inhibitor or angiotensin II receptor blocker classes seem to slow progression. Other than that, we know that some things beat back some symptoms (like steroids and proteinuria), but we don't know if they are of any benefit in the long term. When I say long term, I'm talking about 20-30 years. Good luck. Pierre hello Im new > Hello, Im new to this site and am glad to see that there are people > getting involved. It makes you feel like your not alone. Im from > Seattle WA, 33 years old and was told I had IGAN in December of 04 by > a Kidney Biopsy. A question for anyone, Are there people out there > that are keeping your disorder in check for years and years? Can you > get your Labs stablized using current treatments. If so, would you > share your story and LABS and how long you have been stablized? > Thanks Tim. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 Thanks for your story. I would like to ask you, If you think very aggressive treatment for IGAN (ie immunosuppresive, and prednizone are good ideas early on. My doctor says he thinks at this point they are not good ideas. Are people waiting for those medications until later on in the disease or using those early on? Thanks Tim > Welcome to the group, Tim. > > It's hard to answer questions about stability. It kind of depends how we > define stability and how long we're talking about. You can read my IgAN > story on the " About us " page of www.igan.ca , but just to summarize... > > I started dialysis when I was 49 (going on 3 years ago). I was first > diagnosed with microscopic blood in my urine when I was 23 or 24. Then came > protein. However, for the first 12 years or so, I had no other symptoms, and > I had normal kidney function. So, I could say I was totally stable for 12 > years. Then came the high blood pressure, and my kidney function declined > very slowly but steadily from that point on. But I never had problems with > heavy proteinuria. It was always just mild, and sometimes up in moderate > territory. In terms of serum creatinine during this period, two lab tests > taken as much as a year apart wouldn't have shown much change, so, I could > easily have been said to be " stable " during that time. However, little by > little, my kidney function declined over the years, until I finally ran out > of it, that is, I reached the 10% level and started dialysis. Altogether, it > took 25 years from the discovery of the blood in my urine until I had to > start dialysis. So, my IgAN was apparently stable for many, many years. I > did nothing for this. No diet, no pills of any kind, until I had to start > taking high blood pressure medication. This is the only treatment I ever > had. > > Now, would I have lasted even longer before dialysis if I had had more > aggressive treatment? Possibly (although aggressive treatment just wasn't > done most of the decades I had IgAN, because it was considered to be a > fairly benign kidney disease). This is something that can't be answered. > However, I don't know what kind of shape I would be in now if I had been on > years of oral steroids and other immune system suppressing drugs. I'm on > dialysis now, but I'm pretty healthy for my age otherwise - so far, anyway, > and, for most of those 25 years leading up to dialysis, I had a pretty > normal life, healthwise. Nobody would have known I had any kidney disease at > all except from lab tests. > > There are other people in the group with even longer longevity with IgAN who > aren't on dialysis yet. Some people seem to have all kinds of problems early > on, and others seem to just plug along without too much bother until they > finally run out of kidney function decades later. As I say on the website, > it's a very variable disease, but we all have a clear diagnosis of IgAN via > biopsy. > > But to answer your question specifically, I did keep the disease in check > for years and years (for the better part of 20 years), or rather, the > disease kept itself in check - because I really did nothing for it except > that I did keep physically fit, mostly via walking and cycling, and > squash/racquetball. I eventually had to abandon racquet sports because it > was causing knee problems from the stress of sideways motion on the court, > but I still walk and cycle regularly. Whatever you do though, you absolutely > must keep tabs on blood pressure, and keep it in under very good control if > and when it starts creeping up. At this time, the most proven thing about > IgAN and really, any kind of glomerulonephritis, is that blood pressure meds > of the ACE inhibitor or angiotensin II receptor blocker classes seem to slow > progression. Other than that, we know that some things beat back some > symptoms (like steroids and proteinuria), but we don't know if they are of > any benefit in the long term. When I say long term, I'm talking about 20-30 > years. > > Good luck. > > Pierre > > hello Im new > > > > Hello, Im new to this site and am glad to see that there are people > > getting involved. It makes you feel like your not alone. Im from > > Seattle WA, 33 years old and was told I had IGAN in December of 04 by > > a Kidney Biopsy. A question for anyone, Are there people out there > > that are keeping your disorder in check for years and years? Can you > > get your Labs stablized using current treatments. If so, would you > > share your story and LABS and how long you have been stablized? > > Thanks Tim. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 Thanks for your story. I would like to ask you, If you think very aggressive treatment for IGAN (ie immunosuppresive, and prednizone are good ideas early on. My doctor says he thinks at this point they are not good ideas. Are people waiting for those medications until later on in the disease or using those early on? Thanks Tim > Welcome to the group, Tim. > > It's hard to answer questions about stability. It kind of depends how we > define stability and how long we're talking about. You can read my IgAN > story on the " About us " page of www.igan.ca , but just to summarize... > > I started dialysis when I was 49 (going on 3 years ago). I was first > diagnosed with microscopic blood in my urine when I was 23 or 24. Then came > protein. However, for the first 12 years or so, I had no other symptoms, and > I had normal kidney function. So, I could say I was totally stable for 12 > years. Then came the high blood pressure, and my kidney function declined > very slowly but steadily from that point on. But I never had problems with > heavy proteinuria. It was always just mild, and sometimes up in moderate > territory. In terms of serum creatinine during this period, two lab tests > taken as much as a year apart wouldn't have shown much change, so, I could > easily have been said to be " stable " during that time. However, little by > little, my kidney function declined over the years, until I finally ran out > of it, that is, I reached the 10% level and started dialysis. Altogether, it > took 25 years from the discovery of the blood in my urine until I had to > start dialysis. So, my IgAN was apparently stable for many, many years. I > did nothing for this. No diet, no pills of any kind, until I had to start > taking high blood pressure medication. This is the only treatment I ever > had. > > Now, would I have lasted even longer before dialysis if I had had more > aggressive treatment? Possibly (although aggressive treatment just wasn't > done most of the decades I had IgAN, because it was considered to be a > fairly benign kidney disease). This is something that can't be answered. > However, I don't know what kind of shape I would be in now if I had been on > years of oral steroids and other immune system suppressing drugs. I'm on > dialysis now, but I'm pretty healthy for my age otherwise - so far, anyway, > and, for most of those 25 years leading up to dialysis, I had a pretty > normal life, healthwise. Nobody would have known I had any kidney disease at > all except from lab tests. > > There are other people in the group with even longer longevity with IgAN who > aren't on dialysis yet. Some people seem to have all kinds of problems early > on, and others seem to just plug along without too much bother until they > finally run out of kidney function decades later. As I say on the website, > it's a very variable disease, but we all have a clear diagnosis of IgAN via > biopsy. > > But to answer your question specifically, I did keep the disease in check > for years and years (for the better part of 20 years), or rather, the > disease kept itself in check - because I really did nothing for it except > that I did keep physically fit, mostly via walking and cycling, and > squash/racquetball. I eventually had to abandon racquet sports because it > was causing knee problems from the stress of sideways motion on the court, > but I still walk and cycle regularly. Whatever you do though, you absolutely > must keep tabs on blood pressure, and keep it in under very good control if > and when it starts creeping up. At this time, the most proven thing about > IgAN and really, any kind of glomerulonephritis, is that blood pressure meds > of the ACE inhibitor or angiotensin II receptor blocker classes seem to slow > progression. Other than that, we know that some things beat back some > symptoms (like steroids and proteinuria), but we don't know if they are of > any benefit in the long term. When I say long term, I'm talking about 20-30 > years. > > Good luck. > > Pierre > > hello Im new > > > > Hello, Im new to this site and am glad to see that there are people > > getting involved. It makes you feel like your not alone. Im from > > Seattle WA, 33 years old and was told I had IGAN in December of 04 by > > a Kidney Biopsy. A question for anyone, Are there people out there > > that are keeping your disorder in check for years and years? Can you > > get your Labs stablized using current treatments. If so, would you > > share your story and LABS and how long you have been stablized? > > Thanks Tim. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 Thanks for your story. I would like to ask you, If you think very aggressive treatment for IGAN (ie immunosuppresive, and prednizone are good ideas early on. My doctor says he thinks at this point they are not good ideas. Are people waiting for those medications until later on in the disease or using those early on? Thanks Tim > Welcome to the group, Tim. > > It's hard to answer questions about stability. It kind of depends how we > define stability and how long we're talking about. You can read my IgAN > story on the " About us " page of www.igan.ca , but just to summarize... > > I started dialysis when I was 49 (going on 3 years ago). I was first > diagnosed with microscopic blood in my urine when I was 23 or 24. Then came > protein. However, for the first 12 years or so, I had no other symptoms, and > I had normal kidney function. So, I could say I was totally stable for 12 > years. Then came the high blood pressure, and my kidney function declined > very slowly but steadily from that point on. But I never had problems with > heavy proteinuria. It was always just mild, and sometimes up in moderate > territory. In terms of serum creatinine during this period, two lab tests > taken as much as a year apart wouldn't have shown much change, so, I could > easily have been said to be " stable " during that time. However, little by > little, my kidney function declined over the years, until I finally ran out > of it, that is, I reached the 10% level and started dialysis. Altogether, it > took 25 years from the discovery of the blood in my urine until I had to > start dialysis. So, my IgAN was apparently stable for many, many years. I > did nothing for this. No diet, no pills of any kind, until I had to start > taking high blood pressure medication. This is the only treatment I ever > had. > > Now, would I have lasted even longer before dialysis if I had had more > aggressive treatment? Possibly (although aggressive treatment just wasn't > done most of the decades I had IgAN, because it was considered to be a > fairly benign kidney disease). This is something that can't be answered. > However, I don't know what kind of shape I would be in now if I had been on > years of oral steroids and other immune system suppressing drugs. I'm on > dialysis now, but I'm pretty healthy for my age otherwise - so far, anyway, > and, for most of those 25 years leading up to dialysis, I had a pretty > normal life, healthwise. Nobody would have known I had any kidney disease at > all except from lab tests. > > There are other people in the group with even longer longevity with IgAN who > aren't on dialysis yet. Some people seem to have all kinds of problems early > on, and others seem to just plug along without too much bother until they > finally run out of kidney function decades later. As I say on the website, > it's a very variable disease, but we all have a clear diagnosis of IgAN via > biopsy. > > But to answer your question specifically, I did keep the disease in check > for years and years (for the better part of 20 years), or rather, the > disease kept itself in check - because I really did nothing for it except > that I did keep physically fit, mostly via walking and cycling, and > squash/racquetball. I eventually had to abandon racquet sports because it > was causing knee problems from the stress of sideways motion on the court, > but I still walk and cycle regularly. Whatever you do though, you absolutely > must keep tabs on blood pressure, and keep it in under very good control if > and when it starts creeping up. At this time, the most proven thing about > IgAN and really, any kind of glomerulonephritis, is that blood pressure meds > of the ACE inhibitor or angiotensin II receptor blocker classes seem to slow > progression. Other than that, we know that some things beat back some > symptoms (like steroids and proteinuria), but we don't know if they are of > any benefit in the long term. When I say long term, I'm talking about 20-30 > years. > > Good luck. > > Pierre > > hello Im new > > > > Hello, Im new to this site and am glad to see that there are people > > getting involved. It makes you feel like your not alone. Im from > > Seattle WA, 33 years old and was told I had IGAN in December of 04 by > > a Kidney Biopsy. A question for anyone, Are there people out there > > that are keeping your disorder in check for years and years? Can you > > get your Labs stablized using current treatments. If so, would you > > share your story and LABS and how long you have been stablized? > > Thanks Tim. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2005 Report Share Posted May 29, 2005 You're welcome. You pose a very difficult question to answer, but, I can give you what my own personal view is. I caution you upfront that it may not be a view shared by all IgAN patients in this group. There are simply no cut and dried answers to this. There seems to be a trend for some nephrologists to be more aggressive with treatments, however. But of course, while they mean well, it's not their body. Essentially, I agree with your doctor. I think that using powerful immune system suppressing drugs in the case of mild IgAN without heavy proteinuria may present more risks than benefits. What happens in such cases is that the patient is taking the same drugs that carry the same risks they do for kidney transplant recipients, and often at even larger doses than these. These drugs even make potential transplant recipients think twice about the whole thing sometimes when the transplant nephrologist reads off the list of potential adverse effects. Now, doing so may be very effective in bringing obvious markers like proteinuria down, but in a disease that only progresses over many years, I'm not sure it accomplishes much in the long run. Even without treatment, serum creatinine can appear to be fairly stable for years and years. You wouldn't be able to keep up such a drug regimen forever without causing or risking some pretty serious adverse effects. It's not clear that managing proteinuria in this way has any effect on the long term progression of the classic, slowly-progressing type of IgAN. I would suggest researching this on your own. You can easily do this using pubmed, for example. It's attractive to think that using these drugs early on might induce a remission, but, personally, I don't buy it. I think it may reduce an obvious symptom like proteinuria without actually affecting the underlying process. But, again, I emphasize these are just my own thoughts on the matter. Also, let me reiterate that it's a completely different situation for the person who is faced with rapidly-progressive IgAN. Pierre Re: hello Im new > Thanks for your story. I would like to ask you, If you think very > aggressive treatment for IGAN (ie immunosuppresive, and prednizone > are good ideas early on. My doctor says he thinks at this point they > are not good ideas. Are people waiting for those medications until > later on in the disease or using those early on? Thanks Tim > > > > > >> Welcome to the group, Tim. >> >> It's hard to answer questions about stability. It kind of depends > how we >> define stability and how long we're talking about. You can read my > IgAN >> story on the " About us " page of www.igan.ca , but just to > summarize... >> >> I started dialysis when I was 49 (going on 3 years ago). I was > first >> diagnosed with microscopic blood in my urine when I was 23 or 24. > Then came >> protein. However, for the first 12 years or so, I had no other > symptoms, and >> I had normal kidney function. So, I could say I was totally stable > for 12 >> years. Then came the high blood pressure, and my kidney function > declined >> very slowly but steadily from that point on. But I never had > problems with >> heavy proteinuria. It was always just mild, and sometimes up in > moderate >> territory. In terms of serum creatinine during this period, two lab > tests >> taken as much as a year apart wouldn't have shown much change, so, > I could >> easily have been said to be " stable " during that time. However, > little by >> little, my kidney function declined over the years, until I finally > ran out >> of it, that is, I reached the 10% level and started dialysis. > Altogether, it >> took 25 years from the discovery of the blood in my urine until I > had to >> start dialysis. So, my IgAN was apparently stable for many, many > years. I >> did nothing for this. No diet, no pills of any kind, until I had to > start >> taking high blood pressure medication. This is the only treatment I > ever >> had. >> >> Now, would I have lasted even longer before dialysis if I had had > more >> aggressive treatment? Possibly (although aggressive treatment just > wasn't >> done most of the decades I had IgAN, because it was considered to > be a >> fairly benign kidney disease). This is something that can't be > answered. >> However, I don't know what kind of shape I would be in now if I had > been on >> years of oral steroids and other immune system suppressing drugs. > I'm on >> dialysis now, but I'm pretty healthy for my age otherwise - so far, > anyway, >> and, for most of those 25 years leading up to dialysis, I had a > pretty >> normal life, healthwise. Nobody would have known I had any kidney > disease at >> all except from lab tests. >> >> There are other people in the group with even longer longevity with > IgAN who >> aren't on dialysis yet. Some people seem to have all kinds of > problems early >> on, and others seem to just plug along without too much bother > until they >> finally run out of kidney function decades later. As I say on the > website, >> it's a very variable disease, but we all have a clear diagnosis of > IgAN via >> biopsy. >> >> But to answer your question specifically, I did keep the disease in > check >> for years and years (for the better part of 20 years), or rather, > the >> disease kept itself in check - because I really did nothing for it > except >> that I did keep physically fit, mostly via walking and cycling, and >> squash/racquetball. I eventually had to abandon racquet sports > because it >> was causing knee problems from the stress of sideways motion on the > court, >> but I still walk and cycle regularly. Whatever you do though, you > absolutely >> must keep tabs on blood pressure, and keep it in under very good > control if >> and when it starts creeping up. At this time, the most proven thing > about >> IgAN and really, any kind of glomerulonephritis, is that blood > pressure meds >> of the ACE inhibitor or angiotensin II receptor blocker classes > seem to slow >> progression. Other than that, we know that some things beat back > some >> symptoms (like steroids and proteinuria), but we don't know if they > are of >> any benefit in the long term. When I say long term, I'm talking > about 20-30 >> years. >> >> Good luck. >> >> Pierre >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2005 Report Share Posted May 29, 2005 You're welcome. You pose a very difficult question to answer, but, I can give you what my own personal view is. I caution you upfront that it may not be a view shared by all IgAN patients in this group. There are simply no cut and dried answers to this. There seems to be a trend for some nephrologists to be more aggressive with treatments, however. But of course, while they mean well, it's not their body. Essentially, I agree with your doctor. I think that using powerful immune system suppressing drugs in the case of mild IgAN without heavy proteinuria may present more risks than benefits. What happens in such cases is that the patient is taking the same drugs that carry the same risks they do for kidney transplant recipients, and often at even larger doses than these. These drugs even make potential transplant recipients think twice about the whole thing sometimes when the transplant nephrologist reads off the list of potential adverse effects. Now, doing so may be very effective in bringing obvious markers like proteinuria down, but in a disease that only progresses over many years, I'm not sure it accomplishes much in the long run. Even without treatment, serum creatinine can appear to be fairly stable for years and years. You wouldn't be able to keep up such a drug regimen forever without causing or risking some pretty serious adverse effects. It's not clear that managing proteinuria in this way has any effect on the long term progression of the classic, slowly-progressing type of IgAN. I would suggest researching this on your own. You can easily do this using pubmed, for example. It's attractive to think that using these drugs early on might induce a remission, but, personally, I don't buy it. I think it may reduce an obvious symptom like proteinuria without actually affecting the underlying process. But, again, I emphasize these are just my own thoughts on the matter. Also, let me reiterate that it's a completely different situation for the person who is faced with rapidly-progressive IgAN. Pierre Re: hello Im new > Thanks for your story. I would like to ask you, If you think very > aggressive treatment for IGAN (ie immunosuppresive, and prednizone > are good ideas early on. My doctor says he thinks at this point they > are not good ideas. Are people waiting for those medications until > later on in the disease or using those early on? Thanks Tim > > > > > >> Welcome to the group, Tim. >> >> It's hard to answer questions about stability. It kind of depends > how we >> define stability and how long we're talking about. You can read my > IgAN >> story on the " About us " page of www.igan.ca , but just to > summarize... >> >> I started dialysis when I was 49 (going on 3 years ago). I was > first >> diagnosed with microscopic blood in my urine when I was 23 or 24. > Then came >> protein. However, for the first 12 years or so, I had no other > symptoms, and >> I had normal kidney function. So, I could say I was totally stable > for 12 >> years. Then came the high blood pressure, and my kidney function > declined >> very slowly but steadily from that point on. But I never had > problems with >> heavy proteinuria. It was always just mild, and sometimes up in > moderate >> territory. In terms of serum creatinine during this period, two lab > tests >> taken as much as a year apart wouldn't have shown much change, so, > I could >> easily have been said to be " stable " during that time. However, > little by >> little, my kidney function declined over the years, until I finally > ran out >> of it, that is, I reached the 10% level and started dialysis. > Altogether, it >> took 25 years from the discovery of the blood in my urine until I > had to >> start dialysis. So, my IgAN was apparently stable for many, many > years. I >> did nothing for this. No diet, no pills of any kind, until I had to > start >> taking high blood pressure medication. This is the only treatment I > ever >> had. >> >> Now, would I have lasted even longer before dialysis if I had had > more >> aggressive treatment? Possibly (although aggressive treatment just > wasn't >> done most of the decades I had IgAN, because it was considered to > be a >> fairly benign kidney disease). This is something that can't be > answered. >> However, I don't know what kind of shape I would be in now if I had > been on >> years of oral steroids and other immune system suppressing drugs. > I'm on >> dialysis now, but I'm pretty healthy for my age otherwise - so far, > anyway, >> and, for most of those 25 years leading up to dialysis, I had a > pretty >> normal life, healthwise. Nobody would have known I had any kidney > disease at >> all except from lab tests. >> >> There are other people in the group with even longer longevity with > IgAN who >> aren't on dialysis yet. Some people seem to have all kinds of > problems early >> on, and others seem to just plug along without too much bother > until they >> finally run out of kidney function decades later. As I say on the > website, >> it's a very variable disease, but we all have a clear diagnosis of > IgAN via >> biopsy. >> >> But to answer your question specifically, I did keep the disease in > check >> for years and years (for the better part of 20 years), or rather, > the >> disease kept itself in check - because I really did nothing for it > except >> that I did keep physically fit, mostly via walking and cycling, and >> squash/racquetball. I eventually had to abandon racquet sports > because it >> was causing knee problems from the stress of sideways motion on the > court, >> but I still walk and cycle regularly. Whatever you do though, you > absolutely >> must keep tabs on blood pressure, and keep it in under very good > control if >> and when it starts creeping up. At this time, the most proven thing > about >> IgAN and really, any kind of glomerulonephritis, is that blood > pressure meds >> of the ACE inhibitor or angiotensin II receptor blocker classes > seem to slow >> progression. Other than that, we know that some things beat back > some >> symptoms (like steroids and proteinuria), but we don't know if they > are of >> any benefit in the long term. When I say long term, I'm talking > about 20-30 >> years. >> >> Good luck. >> >> Pierre >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2005 Report Share Posted May 29, 2005 You're welcome. You pose a very difficult question to answer, but, I can give you what my own personal view is. I caution you upfront that it may not be a view shared by all IgAN patients in this group. There are simply no cut and dried answers to this. There seems to be a trend for some nephrologists to be more aggressive with treatments, however. But of course, while they mean well, it's not their body. Essentially, I agree with your doctor. I think that using powerful immune system suppressing drugs in the case of mild IgAN without heavy proteinuria may present more risks than benefits. What happens in such cases is that the patient is taking the same drugs that carry the same risks they do for kidney transplant recipients, and often at even larger doses than these. These drugs even make potential transplant recipients think twice about the whole thing sometimes when the transplant nephrologist reads off the list of potential adverse effects. Now, doing so may be very effective in bringing obvious markers like proteinuria down, but in a disease that only progresses over many years, I'm not sure it accomplishes much in the long run. Even without treatment, serum creatinine can appear to be fairly stable for years and years. You wouldn't be able to keep up such a drug regimen forever without causing or risking some pretty serious adverse effects. It's not clear that managing proteinuria in this way has any effect on the long term progression of the classic, slowly-progressing type of IgAN. I would suggest researching this on your own. You can easily do this using pubmed, for example. It's attractive to think that using these drugs early on might induce a remission, but, personally, I don't buy it. I think it may reduce an obvious symptom like proteinuria without actually affecting the underlying process. But, again, I emphasize these are just my own thoughts on the matter. Also, let me reiterate that it's a completely different situation for the person who is faced with rapidly-progressive IgAN. Pierre Re: hello Im new > Thanks for your story. I would like to ask you, If you think very > aggressive treatment for IGAN (ie immunosuppresive, and prednizone > are good ideas early on. My doctor says he thinks at this point they > are not good ideas. Are people waiting for those medications until > later on in the disease or using those early on? Thanks Tim > > > > > >> Welcome to the group, Tim. >> >> It's hard to answer questions about stability. It kind of depends > how we >> define stability and how long we're talking about. You can read my > IgAN >> story on the " About us " page of www.igan.ca , but just to > summarize... >> >> I started dialysis when I was 49 (going on 3 years ago). I was > first >> diagnosed with microscopic blood in my urine when I was 23 or 24. > Then came >> protein. However, for the first 12 years or so, I had no other > symptoms, and >> I had normal kidney function. So, I could say I was totally stable > for 12 >> years. Then came the high blood pressure, and my kidney function > declined >> very slowly but steadily from that point on. But I never had > problems with >> heavy proteinuria. It was always just mild, and sometimes up in > moderate >> territory. In terms of serum creatinine during this period, two lab > tests >> taken as much as a year apart wouldn't have shown much change, so, > I could >> easily have been said to be " stable " during that time. However, > little by >> little, my kidney function declined over the years, until I finally > ran out >> of it, that is, I reached the 10% level and started dialysis. > Altogether, it >> took 25 years from the discovery of the blood in my urine until I > had to >> start dialysis. So, my IgAN was apparently stable for many, many > years. I >> did nothing for this. No diet, no pills of any kind, until I had to > start >> taking high blood pressure medication. This is the only treatment I > ever >> had. >> >> Now, would I have lasted even longer before dialysis if I had had > more >> aggressive treatment? Possibly (although aggressive treatment just > wasn't >> done most of the decades I had IgAN, because it was considered to > be a >> fairly benign kidney disease). This is something that can't be > answered. >> However, I don't know what kind of shape I would be in now if I had > been on >> years of oral steroids and other immune system suppressing drugs. > I'm on >> dialysis now, but I'm pretty healthy for my age otherwise - so far, > anyway, >> and, for most of those 25 years leading up to dialysis, I had a > pretty >> normal life, healthwise. Nobody would have known I had any kidney > disease at >> all except from lab tests. >> >> There are other people in the group with even longer longevity with > IgAN who >> aren't on dialysis yet. Some people seem to have all kinds of > problems early >> on, and others seem to just plug along without too much bother > until they >> finally run out of kidney function decades later. As I say on the > website, >> it's a very variable disease, but we all have a clear diagnosis of > IgAN via >> biopsy. >> >> But to answer your question specifically, I did keep the disease in > check >> for years and years (for the better part of 20 years), or rather, > the >> disease kept itself in check - because I really did nothing for it > except >> that I did keep physically fit, mostly via walking and cycling, and >> squash/racquetball. I eventually had to abandon racquet sports > because it >> was causing knee problems from the stress of sideways motion on the > court, >> but I still walk and cycle regularly. Whatever you do though, you > absolutely >> must keep tabs on blood pressure, and keep it in under very good > control if >> and when it starts creeping up. At this time, the most proven thing > about >> IgAN and really, any kind of glomerulonephritis, is that blood > pressure meds >> of the ACE inhibitor or angiotensin II receptor blocker classes > seem to slow >> progression. Other than that, we know that some things beat back > some >> symptoms (like steroids and proteinuria), but we don't know if they > are of >> any benefit in the long term. When I say long term, I'm talking > about 20-30 >> years. >> >> Good luck. >> >> Pierre >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2005 Report Share Posted May 30, 2005 Thank you for sharing your story. I am very sorry to hear you are a rapid progressive type. I dont know what catagory Im in yet. my labs when i first got diagnosed were 1.8 creatinine level. 1900mg urine BUN slightly off and slight anemia. A year later I am hovering around 1.6 to 1.7 creatine level. My protien is down to around 700mg. BUN is normal now, and anemia is jut popped over in the normal Range. I had a tonsillectomy is Jan 05, Take Fish oil 1.9 grams DHA,, 1.4 grams EPA, lipator 5 mg, Avapro 75mg for BP and Vit E 400iu. This is all new to me and still trying to accept what happened. Amy Griswold wrote:Hi Tim, Welcome to the group, I'm glad you found us. I'm sorry to hear of your diagnosis...how do your labs look right now? I'm one of the ones in the rapidly progressing group though aggressive treatment with prednisone and good b/p management has kept me fairly stable for the past 20 months. I went from normal labs to roughly 35% kidney function in less than 6 months. I was 34 when I was diagnosed in Sept '03. My creatinine was 2.3, my b/p was 173/116, and I was spilling nearly 4g/24hrs of protein in my urine. I was nephrotic and sliding downhill very fast. I was started on prednisone at high doses along with an ACE inhibitor and fish oil. The prednisone has brought my protein spill down to 200mg/24hrs which helped ease the nephrotic syndrome and, besides my creatinine levels, my labs are all in normal ranges now. The prednisone also reduced the inflammation in my kidneys and in doing so brought my function up to about 45% for a short while. I've been having some problems as of late and a spot check on my creatinine showed me at 2.5, I'm going to be retested on the 3rd to see if I'm back on the downhill slide again. The most important factors are to keep your b/p under control, get any high urine protein spills down as far as possible, stay in good physical shape so your body isn't working against your kidneys, and keep your doctors appointments so they can get on top of things quickly. Many people with IgAN live their entire lives with just a few extra lab visits, a few extra pills to take, and a few more doctors visits a year. Even when you hit end stage renal failure you aren't looking at a death sentence, just a change of life sentence. It truly is a survivable disease. Welcome again to the group. Amy G. hello Im new Hello, Im new to this site and am glad to see that there are people getting involved. It makes you feel like your not alone. Im from Seattle WA, 33 years old and was told I had IGAN in December of 04 by a Kidney Biopsy. A question for anyone, Are there people out there that are keeping your disorder in check for years and years? Can you get your Labs stablized using current treatments. If so, would you share your story and LABS and how long you have been stablized? Thanks Tim. 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 May 30, 2005 Report Share Posted May 30, 2005 Thanks for your story. What where you labs at the time of your diagnoses. Did you say your creatinine was back to normal? Thats would be amazing.... what was it then and what are your numbers now? Thanks Ritanuch@... wrote:Hi Tim, Welcome to the board. I was diagnosed in October of '03 through biopsy. Back in '03 my labs were pretty bad. I was nephrotic. My nephrologist placed me on prednisone and a lot of other meds to try and slow what seemed like a rapid progression. After of few months, my lab values were actually worse. At that point my neph weaned me off of the prednisone and placed me on an imuno-suppresant drug called CellCept. He also upped my intake of fish oil to 8 capsules per day. It worked....my protein spill reduced significantly and my creatinine was in the normal range as of June '04. I get my next set of labs done the end of June. There really aren't any cut and dry answers with this disease. Some people reach ESRD a lot quicker than others and some may not reach it all. What sort of meds are you taking and what do your labs look like? PS We're neighbors - I live in Olympia area :-) Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2005 Report Share Posted May 30, 2005 Thanks for your story. What where you labs at the time of your diagnoses. Did you say your creatinine was back to normal? Thats would be amazing.... what was it then and what are your numbers now? Thanks Ritanuch@... wrote:Hi Tim, Welcome to the board. I was diagnosed in October of '03 through biopsy. Back in '03 my labs were pretty bad. I was nephrotic. My nephrologist placed me on prednisone and a lot of other meds to try and slow what seemed like a rapid progression. After of few months, my lab values were actually worse. At that point my neph weaned me off of the prednisone and placed me on an imuno-suppresant drug called CellCept. He also upped my intake of fish oil to 8 capsules per day. It worked....my protein spill reduced significantly and my creatinine was in the normal range as of June '04. I get my next set of labs done the end of June. There really aren't any cut and dry answers with this disease. Some people reach ESRD a lot quicker than others and some may not reach it all. What sort of meds are you taking and what do your labs look like? PS We're neighbors - I live in Olympia area :-) Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2005 Report Share Posted May 30, 2005 Thanks for your story. What where you labs at the time of your diagnoses. Did you say your creatinine was back to normal? Thats would be amazing.... what was it then and what are your numbers now? Thanks Ritanuch@... wrote:Hi Tim, Welcome to the board. I was diagnosed in October of '03 through biopsy. Back in '03 my labs were pretty bad. I was nephrotic. My nephrologist placed me on prednisone and a lot of other meds to try and slow what seemed like a rapid progression. After of few months, my lab values were actually worse. At that point my neph weaned me off of the prednisone and placed me on an imuno-suppresant drug called CellCept. He also upped my intake of fish oil to 8 capsules per day. It worked....my protein spill reduced significantly and my creatinine was in the normal range as of June '04. I get my next set of labs done the end of June. There really aren't any cut and dry answers with this disease. Some people reach ESRD a lot quicker than others and some may not reach it all. What sort of meds are you taking and what do your labs look like? PS We're neighbors - I live in Olympia area :-) Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2005 Report Share Posted May 30, 2005 Hi Rita....thank you for yor story? Did you enjoy our beautiful weather last week. A couple more questions for you. Where you able to find a good Neph. DR. in the Olympia area or did you come up to Seattle? What are your labs currently at? What were your labs when you first found out. Again thank you for your time. Tim Rita wrote:--- Hi Tim, Welcome! I was diagnosed in october of 03. With the help of a good nephrologist and meds my lab work is a lot better now than it was back in '03, but that is only my experience. Truly this disease varies greatly. Some people have the rapidly progressive type and things may stabalize for a while then get worse. Nothing is cut and dry. This is a chronic disease though and from research we learn that it usually takes approx 20 years to reach ESRD - but again, some people don't ever get there - thankfully! By the way - I live just South of you - in Olympia! Welcome again, Rita 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 May 30, 2005 Report Share Posted May 30, 2005 Hi Rita....thank you for yor story? Did you enjoy our beautiful weather last week. A couple more questions for you. Where you able to find a good Neph. DR. in the Olympia area or did you come up to Seattle? What are your labs currently at? What were your labs when you first found out. Again thank you for your time. Tim Rita wrote:--- Hi Tim, Welcome! I was diagnosed in october of 03. With the help of a good nephrologist and meds my lab work is a lot better now than it was back in '03, but that is only my experience. Truly this disease varies greatly. Some people have the rapidly progressive type and things may stabalize for a while then get worse. Nothing is cut and dry. This is a chronic disease though and from research we learn that it usually takes approx 20 years to reach ESRD - but again, some people don't ever get there - thankfully! By the way - I live just South of you - in Olympia! Welcome again, Rita 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 May 30, 2005 Report Share Posted May 30, 2005 Hi Rita....thank you for yor story? Did you enjoy our beautiful weather last week. A couple more questions for you. Where you able to find a good Neph. DR. in the Olympia area or did you come up to Seattle? What are your labs currently at? What were your labs when you first found out. Again thank you for your time. Tim Rita wrote:--- Hi Tim, Welcome! I was diagnosed in october of 03. With the help of a good nephrologist and meds my lab work is a lot better now than it was back in '03, but that is only my experience. Truly this disease varies greatly. Some people have the rapidly progressive type and things may stabalize for a while then get worse. Nothing is cut and dry. This is a chronic disease though and from research we learn that it usually takes approx 20 years to reach ESRD - but again, some people don't ever get there - thankfully! By the way - I live just South of you - in Olympia! Welcome again, Rita 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 May 30, 2005 Report Share Posted May 30, 2005 Hi Tim, Yes I did enjoy the weather, especially on Saturday. I worked outside all day and boy did my muscles feel it - still do - LOL! I found a great neph in Olympia. He's only 1 of 4 in the entire area. He is from Virginia and I actually had to wait for him to move and settle here before my first appointment. I think I waited about 4 months before getting in. He was absolutely worth the wait! He is young, thorough and keeps on the cutting edge of things. Strangely enough, his Dad also has IgA, so he takes a great interest it. I was his only IgA patient, (so much for being common), but he now has a young man about 16 years old as well. I was supposed to get labs done in October and then recently - but I didn't. I think a little denial was going on in my mind. My last labs were in June of '04. My next appointment is June 24th. I keep an excel chart with my labs...I'll attach it for you to take a look at. Hugs, Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2005 Report Share Posted May 30, 2005 Hi Tim, Yes I did enjoy the weather, especially on Saturday. I worked outside all day and boy did my muscles feel it - still do - LOL! I found a great neph in Olympia. He's only 1 of 4 in the entire area. He is from Virginia and I actually had to wait for him to move and settle here before my first appointment. I think I waited about 4 months before getting in. He was absolutely worth the wait! He is young, thorough and keeps on the cutting edge of things. Strangely enough, his Dad also has IgA, so he takes a great interest it. I was his only IgA patient, (so much for being common), but he now has a young man about 16 years old as well. I was supposed to get labs done in October and then recently - but I didn't. I think a little denial was going on in my mind. My last labs were in June of '04. My next appointment is June 24th. I keep an excel chart with my labs...I'll attach it for you to take a look at. Hugs, Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2005 Report Share Posted May 30, 2005 Hi Tim, Yes I did enjoy the weather, especially on Saturday. I worked outside all day and boy did my muscles feel it - still do - LOL! I found a great neph in Olympia. He's only 1 of 4 in the entire area. He is from Virginia and I actually had to wait for him to move and settle here before my first appointment. I think I waited about 4 months before getting in. He was absolutely worth the wait! He is young, thorough and keeps on the cutting edge of things. Strangely enough, his Dad also has IgA, so he takes a great interest it. I was his only IgA patient, (so much for being common), but he now has a young man about 16 years old as well. I was supposed to get labs done in October and then recently - but I didn't. I think a little denial was going on in my mind. My last labs were in June of '04. My next appointment is June 24th. I keep an excel chart with my labs...I'll attach it for you to take a look at. Hugs, Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 Hi Tim, It sounds like you are fairly stable right now and that is good. I can't help but wonder if your tonsillectomy had anything to do with the improvement in your labs. It does take some time to get adjusted to news that you have a chronic illness. You are among a family of people that do understand! In a message dated 5/30/2005 10:20:55 A.M. Pacific Daylight Time, firedept243@... writes: Thank you for sharing your story. I am very sorry to hear you are a rapid progressive type. I dont know what catagory Im in yet. my labs when i first got diagnosed were 1.8 creatinine level. 1900mg urine BUN slightly off and slight anemia. A year later I am hovering around 1.6 to 1.7 creatine level. My protien is down to around 700mg. BUN is normal now, and anemia is jut popped over in the normal Range. I had a tonsillectomy is Jan 05, Take Fish oil 1.9 grams DHA,, 1.4 grams EPA, lipator 5 mg, Avapro 75mg for BP and Vit E 400iu. This is all new to me and still trying to accept what happened. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 Hi Tim, It sounds like you are fairly stable right now and that is good. I can't help but wonder if your tonsillectomy had anything to do with the improvement in your labs. It does take some time to get adjusted to news that you have a chronic illness. You are among a family of people that do understand! In a message dated 5/30/2005 10:20:55 A.M. Pacific Daylight Time, firedept243@... writes: Thank you for sharing your story. I am very sorry to hear you are a rapid progressive type. I dont know what catagory Im in yet. my labs when i first got diagnosed were 1.8 creatinine level. 1900mg urine BUN slightly off and slight anemia. A year later I am hovering around 1.6 to 1.7 creatine level. My protien is down to around 700mg. BUN is normal now, and anemia is jut popped over in the normal Range. I had a tonsillectomy is Jan 05, Take Fish oil 1.9 grams DHA,, 1.4 grams EPA, lipator 5 mg, Avapro 75mg for BP and Vit E 400iu. This is all new to me and still trying to accept what happened. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 Hi Tim, It sounds like you are fairly stable right now and that is good. I can't help but wonder if your tonsillectomy had anything to do with the improvement in your labs. It does take some time to get adjusted to news that you have a chronic illness. You are among a family of people that do understand! In a message dated 5/30/2005 10:20:55 A.M. Pacific Daylight Time, firedept243@... writes: Thank you for sharing your story. I am very sorry to hear you are a rapid progressive type. I dont know what catagory Im in yet. my labs when i first got diagnosed were 1.8 creatinine level. 1900mg urine BUN slightly off and slight anemia. A year later I am hovering around 1.6 to 1.7 creatine level. My protien is down to around 700mg. BUN is normal now, and anemia is jut popped over in the normal Range. I had a tonsillectomy is Jan 05, Take Fish oil 1.9 grams DHA,, 1.4 grams EPA, lipator 5 mg, Avapro 75mg for BP and Vit E 400iu. This is all new to me and still trying to accept what happened. Quote Link to comment Share on other sites More sharing options...
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