Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Hi Chuck, Prednisone is not a standard treatment for IgAN per se. Rather, it is used to help in cases where there is a problem with excess protein spill. I think most Nephs don't talk about it unless the protein spill is over 3000. If you were not spilling lots of protein, you may have never needed the Prednisone. I am at 18% and was only on Prednisone for one month out of having IgAN for 30 years. In a message dated 12/29/2004 6:04:47 AM Pacific Standard Time, cescudder@... writes: > Would like to hear what is up with the prednisone treatment for IGAN. 7 to > 8 yrs ago when I was sick, I was never on it. Quite frankly, with all of > the side effects of that drug, I'm probably glad. I was on it for the first yr > after transplant, and then they weaned me off of it. To those of you > talking about it... are they using it to arrest the progress of the IGAN? Is it > something you will be on until the kidneys go completely south? Is it only > certain folks using it, or is it a standard treatment now? The only treatment I > had was diet and BP meds, and EPO at a certain point. We had discussed the > fish oil, but my neph was never comfortable with it. Wassup with the pred? > Thanks. > > Chuck, kidney from Sis, 3/98 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 The primary use for prednisone is for reducing heavy proteinuria to more manageable levels. In recent years, some (not all) nephrologists have started using it in cases where proteinuria is more moderate. In some cases, it might be used in mild IgAN in hopes of putting it into some kind of remission. But the catch is, even if it helps while taking it, IgAN is usually not severe enough of a disease to keep a person on prednisone indefinitely. The long term adverse effects of this drug are just too great - maybe worse than the disease being treated. So, you take prednisone for a while, then you have to be weaned off, and then you're back where you started. The " standard " treatment for IgAN is still primarily the same as you had, ie. appropriate BP meds. Fish oil use is still not universally accepted, simply because the evidence is disputable - both actual trial evidence and observable evidence from actual clinical practice. The problem with IgAN is that, while it can and does cause proteinuria, IgAN can progress to esrd even if proteinuria is always relatively mild (as it is for most people who have IgAN). I should know - that's what happened to me. In other words, it appears that while heavier proteinuria is a risk factor on its own for progression to esrd, it does not appear to be the primary mechanism of injury to the kidneys when you have IgAN. In that scenario, it's very disputable as to whether the benefits of prednisone clearly outweigh the risks - unless proteinuria is heavy enough to be treated on its own. Oral steroids can be " miracle drugs " . But they are so only for a relatively short time. Pierre Prednisone treatment? > > > Would like to hear what is up with the prednisone treatment for IGAN. 7 to 8 yrs ago when I was sick, I was never on it. Quite frankly, with all of the side effects of that drug, I'm probably glad. I was on it for the first yr after transplant, and then they weaned me off of it. To those of you talking about it... are they using it to arrest the progress of the IGAN? Is it something you will be on until the kidneys go completely south? Is it only certain folks using it, or is it a standard treatment now? The only treatment I had was diet and BP meds, and EPO at a certain point. We had discussed the fish oil, but my neph was never comfortable with it. Wassup with the pred? Thanks. > > Chuck, kidney from Sis, 3/98 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 The primary use for prednisone is for reducing heavy proteinuria to more manageable levels. In recent years, some (not all) nephrologists have started using it in cases where proteinuria is more moderate. In some cases, it might be used in mild IgAN in hopes of putting it into some kind of remission. But the catch is, even if it helps while taking it, IgAN is usually not severe enough of a disease to keep a person on prednisone indefinitely. The long term adverse effects of this drug are just too great - maybe worse than the disease being treated. So, you take prednisone for a while, then you have to be weaned off, and then you're back where you started. The " standard " treatment for IgAN is still primarily the same as you had, ie. appropriate BP meds. Fish oil use is still not universally accepted, simply because the evidence is disputable - both actual trial evidence and observable evidence from actual clinical practice. The problem with IgAN is that, while it can and does cause proteinuria, IgAN can progress to esrd even if proteinuria is always relatively mild (as it is for most people who have IgAN). I should know - that's what happened to me. In other words, it appears that while heavier proteinuria is a risk factor on its own for progression to esrd, it does not appear to be the primary mechanism of injury to the kidneys when you have IgAN. In that scenario, it's very disputable as to whether the benefits of prednisone clearly outweigh the risks - unless proteinuria is heavy enough to be treated on its own. Oral steroids can be " miracle drugs " . But they are so only for a relatively short time. Pierre Prednisone treatment? > > > Would like to hear what is up with the prednisone treatment for IGAN. 7 to 8 yrs ago when I was sick, I was never on it. Quite frankly, with all of the side effects of that drug, I'm probably glad. I was on it for the first yr after transplant, and then they weaned me off of it. To those of you talking about it... are they using it to arrest the progress of the IGAN? Is it something you will be on until the kidneys go completely south? Is it only certain folks using it, or is it a standard treatment now? The only treatment I had was diet and BP meds, and EPO at a certain point. We had discussed the fish oil, but my neph was never comfortable with it. Wassup with the pred? Thanks. > > Chuck, kidney from Sis, 3/98 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Hey Chuck- I've been on prednisone for 6.5 years, 5.5 before tx, and 1 after so far. My neph had seen some very excouraging data saying the prednisone had slowed, not stopped, the progression of IgAN. At that point in time, my decline in function accelerated, and she and I discussed that as an option. It was a great choice for me. For a while, I had literally turned back the clock, and my function held very steady. With my taper, we finally go down to a point where it was slowing it enough without needing huge doses. I think that I gained at least 3 years for my tx with this treatment. Scudder wrote: Would like to hear what is up with the prednisone treatment for IGAN. 7 to 8 yrs ago when I was sick, I was never on it. Quite frankly, with all of the side effects of that drug, I'm probably glad. I was on it for the first yr after transplant, and then they weaned me off of it. To those of you talking about it... are they using it to arrest the progress of the IGAN? Is it something you will be on until the kidneys go completely south? Is it only certain folks using it, or is it a standard treatment now? The only treatment I had was diet and BP meds, and EPO at a certain point. We had discussed the fish oil, but my neph was never comfortable with it. Wassup with the pred? Thanks. Chuck, kidney from Sis, 3/98 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Hi Pierre, My sense is that (with MPGN, at least!) prednisone also sufficiently suppresses the immune system to stop some aspects of the disease other than just the inflammation if given during the early stages of the disease. For example, IV pred followed by oral administration causes a normalization of C3 and C4. West and McEnerny (who kept MPGN patients on pred indefinitely) at U. of Cincinnati showed that subsequent biopsies looked " cleaner " with respect to immune deposits, as well as inflammation (other groups did not report this). I don't know how or if this relates to IgAN. Cy Prednisone treatment? > > > > > > > > Would like to hear what is up with the prednisone treatment for IGAN. 7 > to 8 yrs ago when I was sick, I was never on it. Quite frankly, with all of > the side effects of that drug, I'm probably glad. I was on it for the first > yr after transplant, and then they weaned me off of it. To those of you > talking about it... are they using it to arrest the progress of the IGAN? > Is it something you will be on until the kidneys go completely south? Is it > only certain folks using it, or is it a standard treatment now? The only > treatment I had was diet and BP meds, and EPO at a certain point. We had > discussed the fish oil, but my neph was never comfortable with it. Wassup > with the pred? Thanks. > > > > Chuck, kidney from Sis, 3/98 > > > > > > > > > > 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 December 29, 2004 Report Share Posted December 29, 2004 Hi Cy, I find that facinating that the repeat biopsies look " cleaner " with continued Prednisone. Let's hope and pray that it had the same effect on . In a message dated 12/29/2004 8:16:59 PM Eastern Standard Time, " Cy Webb " writes: > >Hi Pierre, > >My sense is that (with MPGN, at least!) prednisone also sufficiently >suppresses the immune system to stop some aspects of the disease other than >just the inflammation if given during the early stages of the disease.  For >example, IV pred followed by oral administration causes a normalization of >C3 and C4.  West and McEnerny  (who kept MPGN patients on pred indefinitely) >at U. of Cincinnati showed that subsequent biopsies looked " cleaner " with >respect to immune deposits, as well as inflammation (other groups did not >report this).  I don't know how or if this relates to IgAN. > >Cy > Prednisone treatment? >> >> >> > >> > >> > Would like to hear what is up with the prednisone treatment for IGAN.  7 >> to 8 yrs ago when I was sick, I was never on it.  Quite frankly, with all >of >> the side effects of that drug, I'm probably glad.  I was on it for the >first >> yr after transplant, and then they weaned me off of it.  To those of you >> talking about it... are they using it to arrest the progress of the IGAN? >> Is it something you will be on until the kidneys go completely south?  Is >it >> only certain folks using it, or is it a standard treatment now?  The only >> treatment I had was diet and BP meds, and EPO at a certain point.  We had >> discussed the fish oil, but my neph was never comfortable with it.  Wassup >> with the pred?  Thanks. >> > >> > Chuck, kidney from Sis, 3/98 >> > >> > >> >> >> >> >> >> 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 December 29, 2004 Report Share Posted December 29, 2004 There is certainly more prednisone use now than just a few years ago, I find. The most common thing about IgAN is that the most appropriate treatment is not known. There have been some positive reports about various things, including corticosteroids, but there is little in the way of convincing evidence about anything, except that ACE inhibitors and ARBs seem to be slow progression, as well as reducing proteinuria somewhat. This is what makes it so hard to answer questions like this one. At least with ACEI and ARB's, many people have to take something for blood pressure anyway. I think we're at a point now that, if both the patient and the nephrologist don't mind the side effects, many people can end up being prescribed prednisone, and be perpetually either on it or weaning off from it. When I think about quality of life, it's hard to say that those on prednisone are better off overall, except in cases of nephrotic syndrome. On the other hand, the worst quality of life of all is if someone reaches esrd, so, there's a tendency to give every possible " treatment " a try to see what it will do. One thing I'm concerned about with drugs like prednisone is the tendency some nephrologists have of looking only at the kidneys, and not the rest of the body. They might make the renal numbers look better for a while, but they might not care as much about long term side effects in the patient (which can be quite severe and debilitating). All studies are relatively short, and they look at very specific end-points. The ultimate test is whether prednisone would reduce the rate at which IgAN patients reach esrd. Approximately 1 to 2% of IgAN patients reach esrd each year, and those that do have usually done so only after 10, 20 years or more. So, at that rate, it's going to take a heck of a long study to see what really reduces esrd. Pierre Re: Prednisone treatment? > > > > > > The primary use for prednisone is for reducing heavy proteinuria to more > > manageable levels. In recent years, some (not all) nephrologists have > > started using it in cases where proteinuria is more moderate. In some > cases, > > it might be used in mild IgAN in hopes of putting it into some kind of > > remission. But the catch is, even if it helps while taking it, IgAN is > > usually not severe enough of a disease to keep a person on prednisone > > indefinitely. The long term adverse effects of this drug are just too > > great - maybe worse than the disease being treated. So, you take > prednisone > > for a while, then you have to be weaned off, and then you're back where > you > > started. > > > > The " standard " treatment for IgAN is still primarily the same as you had, > > ie. appropriate BP meds. Fish oil use is still not universally accepted, > > simply because the evidence is disputable - both actual trial evidence and > > observable evidence from actual clinical practice. > > > > The problem with IgAN is that, while it can and does cause proteinuria, > IgAN > > can progress to esrd even if proteinuria is always relatively mild (as it > is > > for most people who have IgAN). I should know - that's what happened to > me. > > In other words, it appears that while heavier proteinuria is a risk factor > > on its own for progression to esrd, it does not appear to be the primary > > mechanism of injury to the kidneys when you have IgAN. In that scenario, > > it's very disputable as to whether the benefits of prednisone clearly > > outweigh the risks - unless proteinuria is heavy enough to be treated on > its > > own. > > > > Oral steroids can be " miracle drugs " . But they are so only for a > relatively > > short time. > > > > Pierre > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2004 Report Share Posted December 30, 2004 Yeah, that was what really jumped out at me. The authors I cited are among the very few that have done a long-term study of large number of MPGN patients. I believe that at least one, if not both of the authors are retired. These guys put MPGN patients on pred indefinately - with very positive results (curiously, tho - their reports are silent as to long term pred effects!). I would like to see someone duplicate their efforts - but granted, with MPGN it's very hard to find a sufficient number of patients to make a credible " n " . It seems to turn on how early you begin prednisone. If it is introduced very early in the game, it appears to forestall the inevitable for very significant duration. Cy Prednisone treatment? > >> > >> > >> > > >> > > >> > Would like to hear what is up with the prednisone treatment for IGAN. 7 > >> to 8 yrs ago when I was sick, I was never on it. Quite frankly, with all > >of > >> the side effects of that drug, I'm probably glad. I was on it for the > >first > >> yr after transplant, and then they weaned me off of it. To those of you > >> talking about it... are they using it to arrest the progress of the IGAN? > >> Is it something you will be on until the kidneys go completely south? Is > >it > >> only certain folks using it, or is it a standard treatment now? The only > >> treatment I had was diet and BP meds, and EPO at a certain point. We had > >> discussed the fish oil, but my neph was never comfortable with it. Wassup > >> with the pred? Thanks. > >> > > >> > Chuck, kidney from Sis, 3/98 > >> > > >> > > >> > >> > >> > >> > >> > >> 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 December 30, 2004 Report Share Posted December 30, 2004 Yeah, that was what really jumped out at me. The authors I cited are among the very few that have done a long-term study of large number of MPGN patients. I believe that at least one, if not both of the authors are retired. These guys put MPGN patients on pred indefinately - with very positive results (curiously, tho - their reports are silent as to long term pred effects!). I would like to see someone duplicate their efforts - but granted, with MPGN it's very hard to find a sufficient number of patients to make a credible " n " . It seems to turn on how early you begin prednisone. If it is introduced very early in the game, it appears to forestall the inevitable for very significant duration. Cy Prednisone treatment? > >> > >> > >> > > >> > > >> > Would like to hear what is up with the prednisone treatment for IGAN. 7 > >> to 8 yrs ago when I was sick, I was never on it. Quite frankly, with all > >of > >> the side effects of that drug, I'm probably glad. I was on it for the > >first > >> yr after transplant, and then they weaned me off of it. To those of you > >> talking about it... are they using it to arrest the progress of the IGAN? > >> Is it something you will be on until the kidneys go completely south? Is > >it > >> only certain folks using it, or is it a standard treatment now? The only > >> treatment I had was diet and BP meds, and EPO at a certain point. We had > >> discussed the fish oil, but my neph was never comfortable with it. Wassup > >> with the pred? Thanks. > >> > > >> > Chuck, kidney from Sis, 3/98 > >> > > >> > > >> > >> > >> > >> > >> > >> 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...
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