Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 Tim: Sorry it's taken me so long to post - this weekend was JPN (that's just plain nuts). After thinking about it, I'm going to say that I had/have the more aggressive form, only because I did make it to ESRD and got a tx. It took about 25 years from fist diagnosis, so maybe it was a little passive agressive. I did the aggressive treament, but only started less than 6 years before my tx. I started with prednisone, and then about 3.5 years later, added the Cellcept. Personally, I had mixed results. The pred did a good job, but I became pred dependent and could never wean off. The Cellcept had initial success, but in the end the side effects outweighed the benefit. Whether or not to start this early really depends on your place in life. Since I really don't know where you are, let me just say a couple of things. If you are looking to have or add to a family, Cellcept is a very bad drug (big birth defect risk) and you have to be free from the drug for a few months before doing so. As for pred, it can do a laundry list of side effects, and honestly, I don't think I've ever met a person who had no side effects from it. If your IgAN becomes dependent, than you'll be on it for the rest of your life, which definitely has issues (I will be doing this, so I am very careful). If you are not experiencing too many issues, personally (and everyone is different) I don't think I would rush into it. You really need to see if other therapies work, and if they do, I would hold off. There, 2 cents added.... firedept243 wrote: 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. > > > > > > 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 31, 2005 Report Share Posted May 31, 2005 Tim: Sorry it's taken me so long to post - this weekend was JPN (that's just plain nuts). After thinking about it, I'm going to say that I had/have the more aggressive form, only because I did make it to ESRD and got a tx. It took about 25 years from fist diagnosis, so maybe it was a little passive agressive. I did the aggressive treament, but only started less than 6 years before my tx. I started with prednisone, and then about 3.5 years later, added the Cellcept. Personally, I had mixed results. The pred did a good job, but I became pred dependent and could never wean off. The Cellcept had initial success, but in the end the side effects outweighed the benefit. Whether or not to start this early really depends on your place in life. Since I really don't know where you are, let me just say a couple of things. If you are looking to have or add to a family, Cellcept is a very bad drug (big birth defect risk) and you have to be free from the drug for a few months before doing so. As for pred, it can do a laundry list of side effects, and honestly, I don't think I've ever met a person who had no side effects from it. If your IgAN becomes dependent, than you'll be on it for the rest of your life, which definitely has issues (I will be doing this, so I am very careful). If you are not experiencing too many issues, personally (and everyone is different) I don't think I would rush into it. You really need to see if other therapies work, and if they do, I would hold off. There, 2 cents added.... firedept243 wrote: 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. > > > > > > 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 June 1, 2005 Report Share Posted June 1, 2005 As usual , you always put a smile on my face. I love the bit about your IgAN being passive aggressive :-) In a message dated 5/31/2005 6:35:46 P.M. Pacific Daylight Time, garymattcohen@... writes: After thinking about it, I'm going to say that I had/have the more aggressive form, only because I did make it to ESRD and got a tx. It took about 25 years from fist diagnosis, so maybe it was a little passive aggressive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 As usual , you always put a smile on my face. I love the bit about your IgAN being passive aggressive :-) In a message dated 5/31/2005 6:35:46 P.M. Pacific Daylight Time, garymattcohen@... writes: After thinking about it, I'm going to say that I had/have the more aggressive form, only because I did make it to ESRD and got a tx. It took about 25 years from fist diagnosis, so maybe it was a little passive aggressive. Quote Link to comment Share on other sites More sharing options...
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