Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 ,,,,my daughter went on it about a week after her biopsy,,,she was on it for a year and a couple of months,,,her labs started to look better ,,,now she is off of it,,,when she was on it,,,she went to see her neph monthly,,now that her labs are so much better she only goes every 3 months,,,he said after he sees her in nov,,they may start seeing her every 6 months,,,but her dr will be moving out of state the end of nov,,so will his helper,,,so we are sad about that,,the only bad side effect of the prednisone we saw was her gaining over 50 pounds on it,,,,,and her and myself have tryed her cutting back on foods,,but the wieght just dont seem to wnat to come back off now,,,,but like i said her labs are good now,,,,or great!!!!,,,,if i had it to do over agian,,,we wouild do it again,,,,bye for now,,,god bless you,,,,,,crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 , I've been on prednisone since Sept 30, 2003. I was started on it after the initial results of my biopsy came back showing major damage. My serum creatinine level was at 2.3, my proteinurea was about 3900mg, I was at a 3+ for blood in the urine, and my GFR was 35. My biopsy shows me as a class 5 on the WHO rating system with crescents and much scarring...basically if you go by my biopsy alone I should be on dialysis right now. I was started on 3 days of 1000mg IV steroids, then dropped to 80mg daily oral prednisone. Within 3 months my proteinurea level was down to 600mg and within 9 months it was at 170mg. My GFR had also come up to 45. Over the past year my serum creatinine levels have gone as high as 2.4 and as low as 1.9 currently it has been holding steady at 2.4. Over the past 13 months I've gone from 80mg daily prednisone dose to 5mg daily. My labs started to worsen at the 5mg and I was raised back up to 10mg in Sept '04. My proteinurea levels have continued to climb even on the 10mg from 387mg to 930mg and my last reading was 1200mg, so when I see my neph again next month we may make some further changes. I have hope but I'm also realistic knowing that I have all the major factors that point me to end stage in the coming years. The only reason I see my neph every 4-8 weeks is due to the prednisone. You need to be monitored carefully when on steroids and I've been very happy with the care I have received so far. The steroids have given me a year of stability that I don't think I would have had without them. It's given me time to come to terms with this disease so where I go from here isn't as major now as it was a year ago. I know I can cope and I know I will. Your neph makes the decision on how far apart your appointments should be based on the medications you are on and your level of stability. What do your labs look like now? When you say crappy...how crappy is crappy? ) Amy G. when did you start prednisone? > > > Hi, > As I read through messages I am struck by the number of the folks out there on > prednisone. Could any of you share when you went on it, what were your labs like, > was there an event that led up to it etc? My neph talked with me once a while back > about it, saying if my labs continued on the same trend it should be seriously > considered. I reacted very strongly and negatively to the idea of prednisone and to > having had the need for " the " talk. Well, now my labs are crappier than when we had > " the " talk and he hasn't brought up prednisone at all. I am wondering if he decided I > was outright refusing it and isn't going to offer it again. > > I also note that many of you seem to see your neph quite frequently. I see mine > sometimes every six months and sometimes every four. > > So anything anyone can tell me about where your IgAN was when you went on > prednisone would be great. I know that even though we all have IgAN, we are all very > different, I am just interested if there is a trend. > > thanks and peace, > > > > > > > > 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 October 23, 2004 Report Share Posted October 23, 2004 Hi , I only did Prednisone for a very short time period of about a month when my creatinine was about 2.5 or so. I normally only saw my Neph every 6 months or so, sometimes longer until I got to around 30% function then I went to every 3-4 months. Now I am at 18% and I go once a month. I think the main thing that determines Prednisone treatment is how much protein you are spilling and what the biopsy looks like. In a message dated 10/21/2004 9:59:59 PM Pacific Daylight Time, sarahandderek@... writes: > Hi, > As I read through messages I am struck by the number of the folks out there > on > prednisone. Could any of you share when you went on it, what were your labs > like, > was there an event that led up to it etc? My neph talked with me once a > while back > about it, saying if my labs continued on the same trend it should be > seriously > considered. I reacted very strongly and negatively to the idea of prednisone > and to > having had the need for " the " talk. Well, now my labs are crappier than when > we had > " the " talk and he hasn't brought up prednisone at all. I am wondering if he > decided I > was outright refusing it and isn't going to offer it again. > > I also note that many of you seem to see your neph quite frequently. I see > mine > sometimes every six months and sometimes every four. > > So anything anyone can tell me about where your IgAN was when you went on > prednisone would be great. I know that even though we all have IgAN, we are > all very > different, I am just interested if there is a trend. > > thanks and peace, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 Hi , I started prednisone Mar 17 2004. My neph for a year prior suggested that I go on the pred but I did refuse at the time, mainly due to my wedding in Oct 2003. I had 50% kidney function prior, it dropped to about 30-35% in that year. Despite this, I don't regret delaying my prednisone treatment: planning a wedding and dealing with prednisone side effects would have been too much for me. My labs at the start were on an upward trend (which is what concerned my neph the most), it was 293 for serum creatinine (without ACE inhibitor) and 3 g protein. So anyway, I started on 40 mg daily oral only, then dropped to 30 mg about a month later b/c it spiked my bp too high. My bp meds were also adjusted sometime later due to my heart rate being too slow. During the course of treatment, my creatinine had dropped to about 250 at one point (and on the ACE inhibitor, to boot!). However, the last lab before I was ok'd to taper the prednisone was 302 for serum creatinine and 0.3 g protein. I was kept on this 30 mg daily treatment until early this month. I am now tapering the prednisone medication, dropping every 5 mg every 2 wks. So right now, I just started on 20 mg daily. If all goes well, I'll be done by December 19. Yay! While on the prednisone, I had to do bi-weekly labs and see him monthly, esp at the beginning. I believe it's to help him make any adjustments to any and all meds as needed, b/c prednisone has so many side effects and can affect different people in different ways, including the effectiveness of prednisone in stabilizing/improving kidney function. My own neph never really looked at the absolute numbers on the labs, he cared more about the increase in serum creatinine/proteinuria/hematuria over time in making the determination that I should be on the pred. But I think you could ask your neph to explain what exactly is he seeing that makes him recommend the use of prednisone. Also, as I have learned, just b/c the neph doesn't mention the prednisone treatment at every appointment doesn't mean he still isn't thinking or recommending it. My neph mentioned it once and then not again until six months later - when he truly STRONGLY recommended, heh. Hope this helps, Sophia > > Hi, > As I read through messages I am struck by the number of the folks out there on > prednisone. Could any of you share when you went on it, what were your labs like, > was there an event that led up to it etc? My neph talked with me once a while back > about it, saying if my labs continued on the same trend it should be seriously > considered. I reacted very strongly and negatively to the idea of prednisone and to > having had the need for " the " talk. Well, now my labs are crappier than when we had > " the " talk and he hasn't brought up prednisone at all. I am wondering if he decided I > was outright refusing it and isn't going to offer it again. > > I also note that many of you seem to see your neph quite frequently. I see mine > sometimes every six months and sometimes every four. > > So anything anyone can tell me about where your IgAN was when you went on > prednisone would be great. I know that even though we all have IgAN, we are all very > different, I am just interested if there is a trend. > > thanks and peace, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 : Sorry it's taken a while to get back to you - I was in NYC enjoying a reunion with some of my fraternity brothers. I think that I have done more connecting with my past after my transplant than I had before... I have been on prednisone for a little over 6 years now. I started because my creatinine was bouncing all over the place, and my my thought that it would calm things down (it did). It was very hard on me at first, but my dosage had dropped to 10mg/every other day pre-tx, and 5mg/day post (so it's the same basically). My results stayed fairly consistent for some time, but then they started to go up again. I did become dependent on prednisone to hold my numbers, so that is also a possibility. I see my neph every two months now. At first it was every 4 months, then 3, 2, and finally monthly for about a year. I am told this will go back up to quarterly soon. thewhologans wrote: Hi, As I read through messages I am struck by the number of the folks out there on prednisone. Could any of you share when you went on it, what were your labs like, was there an event that led up to it etc? My neph talked with me once a while back about it, saying if my labs continued on the same trend it should be seriously considered. I reacted very strongly and negatively to the idea of prednisone and to having had the need for " the " talk. Well, now my labs are crappier than when we had " the " talk and he hasn't brought up prednisone at all. I am wondering if he decided I was outright refusing it and isn't going to offer it again. I also note that many of you seem to see your neph quite frequently. I see mine sometimes every six months and sometimes every four. So anything anyone can tell me about where your IgAN was when you went on prednisone would be great. I know that even though we all have IgAN, we are all very different, I am just interested if there is a trend. thanks and peace, 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 November 3, 2004 Report Share Posted November 3, 2004 Was reading past messages... thanks to those who pointed out they were there. Seems like many of us are on this crazy steriod!! I'm curious what your duration has been, and if it held the levels down, and if they went back up after you tapered off the drug. I started 6 months ago at 120mg every other day, creat of 2.8, urineprotein anywhere from 660-2400 and 3+ in urine...... by the third month I was up and down with the creat. to 2.2, and when I keep to the low protein diet <although the neph says it has nothing to do with it> my urineprotein goes down..... Now that I've been tapering for 6 weeks or so, my creat. went back up to 2.8.... and IM WORRIED about my appointment next week, if it's over 3.0 I'm gonna freak. And yes, I also see the Neph. every month because he needs to monitor while on steroids.... in fact.. he thought I had a blood clot in my leg from them... but turned out to just be uneven adema. For " moderate " staged IgA, in my case.. it was a chance I had to take, that it would work.... but they predicted it wouldn't. Now I'm just very concerned about where I go from here.... I've run out of treatment options....... scary. Last June my creat was 1.8. This June it was 2.8, so do I go up a point a year... that makes 2 years and we're talking serious stuff... does it work like that???? Ali > , > I've been on prednisone since Sept 30, 2003. I was started on it after > the initial results of my biopsy came back showing major damage. My serum > creatinine level was at 2.3, my proteinurea was about 3900mg, I was at a 3+ > for blood in the urine, and my GFR was 35. My biopsy shows me as a class 5 > on the WHO rating system with crescents and much scarring...basically if you > go by my biopsy alone I should be on dialysis right now. I was started on 3 > days of 1000mg IV steroids, then dropped to 80mg daily oral prednisone. > Within 3 months my proteinurea level was down to 600mg and within 9 months > it was at 170mg. My GFR had also come up to 45. Over the past year my > serum creatinine levels have gone as high as 2.4 and as low as 1.9 currently > it has been holding steady at 2.4. > > Over the past 13 months I've gone from 80mg daily prednisone dose to 5mg > daily. My labs started to worsen at the 5mg and I was raised back up to > 10mg in Sept '04. My proteinurea levels have continued to climb even on the > 10mg from 387mg to 930mg and my last reading was 1200mg, so when I see my > neph again next month we may make some further changes. I have hope but I'm > also realistic knowing that I have all the major factors that point me to > end stage in the coming years. > > The only reason I see my neph every 4-8 weeks is due to the prednisone. You > need to be monitored carefully when on steroids and I've been very happy > with the care I have received so far. The steroids have given me a year of > stability that I don't think I would have had without them. It's given me > time to come to terms with this disease so where I go from here isn't as > major now as it was a year ago. I know I can cope and I know I will. > > Your neph makes the decision on how far apart your appointments should be > based on the medications you are on and your level of stability. What do > your labs look like now? When you say crappy...how crappy is crappy? ) > > Amy G. > when did you start prednisone? > > > > > > > > Hi, > > As I read through messages I am struck by the number of the folks out > there on > > prednisone. Could any of you share when you went on it, what were your > labs like, > > was there an event that led up to it etc? My neph talked with me once a > while back > > about it, saying if my labs continued on the same trend it should be > seriously > > considered. I reacted very strongly and negatively to the idea of > prednisone and to > > having had the need for " the " talk. Well, now my labs are crappier than > when we had > > " the " talk and he hasn't brought up prednisone at all. I am wondering if > he decided I > > was outright refusing it and isn't going to offer it again. > > > > I also note that many of you seem to see your neph quite frequently. I see > mine > > sometimes every six months and sometimes every four. > > > > So anything anyone can tell me about where your IgAN was when you went on > > prednisone would be great. I know that even though we all have IgAN, we > are all very > > different, I am just interested if there is a trend. > > > > thanks and peace, > > > > > > > > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > > home page: > > http://groups.<a href= " http://www.serverlogic3.com/lm/rtl3.asp? si=1 & k=yahoo%20com " onmouseover= " window.status='yahoo.com'; return true; " onmouseout= " window.status=''; return true; " >yahoo.com</a>/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 November 3, 2004 Report Share Posted November 3, 2004 Was reading past messages... thanks to those who pointed out they were there. Seems like many of us are on this crazy steriod!! I'm curious what your duration has been, and if it held the levels down, and if they went back up after you tapered off the drug. I started 6 months ago at 120mg every other day, creat of 2.8, urineprotein anywhere from 660-2400 and 3+ in urine...... by the third month I was up and down with the creat. to 2.2, and when I keep to the low protein diet <although the neph says it has nothing to do with it> my urineprotein goes down..... Now that I've been tapering for 6 weeks or so, my creat. went back up to 2.8.... and IM WORRIED about my appointment next week, if it's over 3.0 I'm gonna freak. And yes, I also see the Neph. every month because he needs to monitor while on steroids.... in fact.. he thought I had a blood clot in my leg from them... but turned out to just be uneven adema. For " moderate " staged IgA, in my case.. it was a chance I had to take, that it would work.... but they predicted it wouldn't. Now I'm just very concerned about where I go from here.... I've run out of treatment options....... scary. Last June my creat was 1.8. This June it was 2.8, so do I go up a point a year... that makes 2 years and we're talking serious stuff... does it work like that???? Ali > , > I've been on prednisone since Sept 30, 2003. I was started on it after > the initial results of my biopsy came back showing major damage. My serum > creatinine level was at 2.3, my proteinurea was about 3900mg, I was at a 3+ > for blood in the urine, and my GFR was 35. My biopsy shows me as a class 5 > on the WHO rating system with crescents and much scarring...basically if you > go by my biopsy alone I should be on dialysis right now. I was started on 3 > days of 1000mg IV steroids, then dropped to 80mg daily oral prednisone. > Within 3 months my proteinurea level was down to 600mg and within 9 months > it was at 170mg. My GFR had also come up to 45. Over the past year my > serum creatinine levels have gone as high as 2.4 and as low as 1.9 currently > it has been holding steady at 2.4. > > Over the past 13 months I've gone from 80mg daily prednisone dose to 5mg > daily. My labs started to worsen at the 5mg and I was raised back up to > 10mg in Sept '04. My proteinurea levels have continued to climb even on the > 10mg from 387mg to 930mg and my last reading was 1200mg, so when I see my > neph again next month we may make some further changes. I have hope but I'm > also realistic knowing that I have all the major factors that point me to > end stage in the coming years. > > The only reason I see my neph every 4-8 weeks is due to the prednisone. You > need to be monitored carefully when on steroids and I've been very happy > with the care I have received so far. The steroids have given me a year of > stability that I don't think I would have had without them. It's given me > time to come to terms with this disease so where I go from here isn't as > major now as it was a year ago. I know I can cope and I know I will. > > Your neph makes the decision on how far apart your appointments should be > based on the medications you are on and your level of stability. What do > your labs look like now? When you say crappy...how crappy is crappy? ) > > Amy G. > when did you start prednisone? > > > > > > > > Hi, > > As I read through messages I am struck by the number of the folks out > there on > > prednisone. Could any of you share when you went on it, what were your > labs like, > > was there an event that led up to it etc? My neph talked with me once a > while back > > about it, saying if my labs continued on the same trend it should be > seriously > > considered. I reacted very strongly and negatively to the idea of > prednisone and to > > having had the need for " the " talk. Well, now my labs are crappier than > when we had > > " the " talk and he hasn't brought up prednisone at all. I am wondering if > he decided I > > was outright refusing it and isn't going to offer it again. > > > > I also note that many of you seem to see your neph quite frequently. I see > mine > > sometimes every six months and sometimes every four. > > > > So anything anyone can tell me about where your IgAN was when you went on > > prednisone would be great. I know that even though we all have IgAN, we > are all very > > different, I am just interested if there is a trend. > > > > thanks and peace, > > > > > > > > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > > home page: > > http://groups.<a href= " http://www.serverlogic3.com/lm/rtl3.asp? si=1 & k=yahoo%20com " onmouseover= " window.status='yahoo.com'; return true; " onmouseout= " window.status=''; return true; " >yahoo.com</a>/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 November 3, 2004 Report Share Posted November 3, 2004 Ali it can work that way, unfortunately. IgAN can take on an aggressive form and those of us with it can go from normal to dialysis quite rapidly. Most IgAN patients see years and years before they even have to think about end stage let alone reach it and many never do. I have the same worries as you do, some of my nephs associates said I was untreatable and not to even bother with the pred. My creatinine was at 2.3 and protein was a 3+ nearly a 4 when first diagnosed, it went down to 1.9 and protein of .2 on the higher doses of pred, I've been tapering for a year and now my creatinine is at 2.4 and my proteinurea is on the rise again. I have the aggressive form of the disease and like you have many unknowns once they decide to wean me off the pred. I could stay stable for a long time if it's put it into remission or I could start sliding fast again with no real treatment options left to me. My last visit my protienurea was back up at near 1+ and they increased my pred dose again to see if it would drop. I was tested a few weeks ago after about a month on the higher dose and I was at over 1+ so it didn't appear to be working....I'll see in a few more weeks when I go back in for more labs. I view my year on pred as a way to buy me time to work out what I will do if end stage comes. I feel it wasn't time wasted as it gave me a year of stability I wouldn't have had. If I decline from here at least I had that year to come to terms with things. It's hard not to worry about it but in the same instance it's something we have no control over so....worrying only increases our blood pressure. ) My philosophy now is do what I can (exercise, eat right, keep my blood pressure under control, try to keep healthy) and the rest will be addressed as it happens. Hang in there and know you aren't alone with this...sometimes just that thought can make it a little less scary. Amy G. when did you start prednisone? > > > > > > > > > > > > > Hi, > > > As I read through messages I am struck by the number of the folks > out > > there on > > > prednisone. Could any of you share when you went on it, what were > your > > labs like, > > > was there an event that led up to it etc? My neph talked with me > once a > > while back > > > about it, saying if my labs continued on the same trend it should > be > > seriously > > > considered. I reacted very strongly and negatively to the idea of > > prednisone and to > > > having had the need for " the " talk. Well, now my labs are > crappier than > > when we had > > > " the " talk and he hasn't brought up prednisone at all. I am > wondering if > > he decided I > > > was outright refusing it and isn't going to offer it again. > > > > > > I also note that many of you seem to see your neph quite > frequently. I see > > mine > > > sometimes every six months and sometimes every four. > > > > > > So anything anyone can tell me about where your IgAN was when you > went on > > > prednisone would be great. I know that even though we all have > IgAN, we > > are all very > > > different, I am just interested if there is a trend. > > > > > > thanks and peace, > > > > > > > > > > > > > > > > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > > > home page: > > > http://groups.<a href= " http://www.serverlogic3.com/lm/rtl3.asp? > si=1 & k=yahoo%20com " onmouseover= " window.status='yahoo.com'; return > true; " onmouseout= " window.status=''; return > true; " >yahoo.com</a>/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 November 3, 2004 Report Share Posted November 3, 2004 Hi Ali, I was only on Prednisone for one month, and I didn't do well with the side effects. I will have to defer to other members to help on their Prednisone experience. I do hope you get good news when you get your next labs. Please keep us informed and let us know. In a message dated 11/3/2004 6:39:26 PM Eastern Standard Time, " nesi1a " writes: > > >Was reading past messages... thanks to those who pointed out they >were there. > >Seems like many of us are on this crazy steriod!! I'm curious what >your duration has been, and if it held the levels down, and if they >went back up after you tapered off the drug. > >I started 6 months ago at 120mg every other day, creat of 2.8, >urineprotein anywhere from 660-2400 and 3+ in urine...... by the >third month I was up and down with the creat. to 2.2, and when I keep >to the low protein diet <although the neph says it has nothing to do >with it> my urineprotein goes down..... Now that I've been tapering >for 6 weeks or so, my creat. went back up to 2.8.... and IM WORRIED >about my appointment next week, if it's over 3.0 I'm gonna freak. And >yes, I also see the Neph. every month because he needs to monitor >while on steroids.... in fact.. he thought I had a blood clot in my >leg from them... but turned out to just be uneven adema. > >For " moderate " staged IgA, in my case.. it was a chance I had to >take, that it would work.... but they predicted it wouldn't. Now I'm >just very concerned about where I go from here.... I've run out of >treatment options....... scary. > >Last June my creat was 1.8. This June it was 2.8, so do I go up a >point a year... that makes 2 years and we're talking serious stuff... >does it work like that???? > >Ali > > >> , >> Â Â I've been on prednisone since Sept 30, 2003. Â I was started on >it after >> the initial results of my biopsy came back showing major damage. Â >My serum >> creatinine level was at 2.3, my proteinurea was about 3900mg, I was >at a 3+ >> for blood in the urine, and my GFR was 35. Â My biopsy shows me as a >class 5 >> on the WHO rating system with crescents and much >scarring...basically if you >> go by my biopsy alone I should be on dialysis right now. Â I was >started on 3 >> days of 1000mg IV steroids, then dropped to 80mg daily oral >prednisone. >> Within 3 months my proteinurea level was down to 600mg and within 9 >months >> it was at 170mg. Â My GFR had also come up to 45. Â Over the past >year my >> serum creatinine levels have gone as high as 2.4 and as low as 1.9 >currently >> it has been holding steady at 2.4. >> >> Over the past 13 months I've gone from 80mg daily prednisone dose >to 5mg >> daily. Â My labs started to worsen at the 5mg and I was raised back >up to >> 10mg in Sept '04. Â My proteinurea levels have continued to climb >even on the >> 10mg from 387mg to 930mg and my last reading was 1200mg, so when I >see my >> neph again next month we may make some further changes. Â I have >hope but I'm >> also realistic knowing that I have all the major factors that point >me to >> end stage in the coming years. >> >> The only reason I see my neph every 4-8 weeks is due to the >prednisone. Â You >> need to be monitored carefully when on steroids and I've been very >happy >> with the care I have received so far. Â The steroids have given me a >year of >> stability that I don't think I would have had without them. Â It's >given me >> time to come to terms with this disease so where I go from here >isn't as >> major now as it was a year ago. Â I know I can cope and I know I >will. >> >> Your neph makes the decision on how far apart your appointments >should be >> based on the medications you are on and your level of stability. Â >What do >> your labs look like now? Â When you say crappy...how crappy is >crappy? Â ) >> >> Amy G. >> when did you start prednisone? >> >> >> > >> > >> > Hi, >> > As I read through messages I am struck by the number of the folks >out >> there on >> > prednisone. Could any of you share when you went on it, what were >your >> labs like, >> > was there an event that led up to it etc? My neph talked with me >once a >> while back >> > about it, saying if my labs continued on the same trend it should >be >> seriously >> > considered. I reacted very strongly and negatively to the idea of >> prednisone and to >> > having had the need for " the " talk. Well, now my labs are >crappier than >> when we had >> > " the " talk and he hasn't brought up prednisone at all. I am >wondering if >> he decided I >> > was outright refusing it and isn't going to offer it again. >> > >> > I also note that many of you seem to see your neph quite >frequently. I see >> mine >> > sometimes every six months and sometimes every four. >> > >> > So anything anyone can tell me about where your IgAN was when you >went on >> > prednisone would be great. I know that even though we all have >IgAN, we >> are all very >> > different, I am just interested if there is a trend. >> > >> > thanks and peace, >> > >> > >> > >> > >> > >> > >> > >> > To edit your settings for the group, go to our Yahoo Group >> > home page: >> > http://groups.<a href= " http://www.serverlogic3.com/lm/rtl3.asp? >si=1 & k=yahoo%20com " onmouseover= " window.status='yahoo.com'; return >true; " onmouseout= " window.status=''; return >true; " >yahoo.com</a>/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 November 4, 2004 Report Share Posted November 4, 2004 Some of you who are taking prednisone and hoping you will get improved kidney function based on serum creatinine results have unrealistic expectations. There can be variations in serum creatinine, but, prednisone is not meant to change your serum creatinine numbers, it's meant to lower your proteinuria. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Pierre is right. Although the main goal of prednisone therapy in IGAN is to keep creatinine from getting worse (higher), there is less evidence in the medical literature that prednisone achieves this goal consistently for all people with IGAN. That doesn't mean prednisone doesn't help people with IGAN -- it just means we don't have enough studies right now that DEFINITIVELY PROVE it helps. We do know that prednisone does do a good job of lowering protein in the urine of people with IGAN, and, since protein is clearly a marker for IGAN progression toward end-stage renal disease and dialysis, most nephrologists think prednisone is a good drug for people who have more than 1 gram of protein in their urine each day. --Dave > Some of you who are taking prednisone and hoping you will get improved > kidney function based on serum creatinine results have unrealistic > expectations. There can be variations in serum creatinine, but, prednisone > is not meant to change your serum creatinine numbers, it's meant to lower > your proteinuria. > > Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Pierre. I'm so confused.. my Neph. told me the exact opposite!! help!!!!!! <did i just misuderstand him??> Ali Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 As Dave explained earlier today, there might be some preventative benefit to taking prednisone, in that, since it lowers proteinuria, it helps reduce that as a risk factor for progression of the disease. However, prednisone isn't really a drug that will improve kidney function that has already been lost. Long term use of prednisone carries a significant possibility (or likelyhood, really) of adverse effects on the body, so, unlike a blood pressure pill, it's not really something that a person can be on forever, at least not typically. People who have had an organ transplant might be on it for good, but in their case, the benefits are more important than the risks. Now, for a person who has IgAN but proteinuria less than 1000 milligrams (or 1 gram) per day, it's the opposite of that, ie. the risks of being on long term prednisone are considered to be more significant than the benefits. Once the proteinuria is down below that level, the drug is usually tapered off. What is observed in order to judge the success of prednisone therapy, therefore, isn't really the serum creatinine results, but rather the proteinuria number. That's not to say creatinine can never improve. Sometimes it's a little higher than at other times, and there are several factors that can affect it. In recent years, some nephrologists have become a little more aggressive in using prednisone. It used to be that the cut-off point was 3.5 grams per day of proteinuria (this is heavy, nephrotic-range proteinuria), and even then, only if the patient showed symptoms of nephrotic syndrome due to the heavy proteinuria. Many still adhere to that view, more or less. Keep in mind that treatment ordred for IgAN might be more aggressive if the IgAN itself is more aggressive. In that case, it might sometimes be worth trying to slow it down using prednisone, whereas in more slowly-progressing cases, it might not. Pierre Re: when did you start prednisone? > > Pierre. > > I'm so confused.. my Neph. told me the exact opposite!! help!!!!!! <did i just misuderstand him??> > > Ali > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Ali, The way my neph described it is this: The prednisone reduces the inflammation in the kidneys by reducing the amount of protein you are spilling, the reduction of inflammation is what causes your creatinine level to drop a bit, if your protein spill increases, the inflammation increases, and therefore so does your creatinine level. This is why some people see a significant drop in their serum creatinine levels on prednisone, it's from the reduction of inflammation not any healing properties of the drug. Does that make sense? My creatinine dropped because my protein level dropped causing less inflammation to my kidneys which allows them to filter better short term. Now that my protein level is on the rise again my creatinine level is coming back up most likely due to increased inflammation in the kidneys. Hope that helps... Amy G. Re: when did you start prednisone? > > Pierre. > > I'm so confused.. my Neph. told me the exact opposite!! help!!!!!! <did i just misuderstand him??> > > Ali > > > > 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 November 4, 2004 Report Share Posted November 4, 2004 I know all this sounds really confusing, but, especially for the newbies in the group, IgAN isn't the same in everyone. The primary problem caused by IgAN is not really inflammation. It's IgA immune complexes (big proteins) being deposited in the mesangium of the glomeruli and clogging up the glomeruli to the point that they become non-functional. The glomeruli are little clumps of tiny blood vessel that act as the filters in the kidneys. Each glomerulus has a kind of structure that keeps this little clump of blood vessels together. I'm oversimplifying a bit, but the space around these blood vessels in each glomerulus is called the " mesangium " . Somehow, and nobody really knows why this happens, the IgA complexes, which are really large proteins that circulate in the blood (of everyone, not just people with IgAN) are deposited in there and they get trapped. Eventually, the mesangium in each of the million or so glomeruli in each kidney expands because of this (literally filling up with IgA proteins), and this eventually squeezes the little blood vessels until they filter less and less. This is the basic disease process that is the essence of IgAN. Now, in some people more than in others, the presence of these IgA proteins in the mesangium seems to lead to inflammation of the glomeruli's blood vessels themselves. This is basically what causes proteinuria, and the blood in the urine. Some people have little inflammation, some have a lot. It depends on the individual. Those who have more of this inflammation tend to have heavier proteinuria. This inflammation itself can cause some loss of kidney function over and above that caused by the IgAN process in the mesangial areas of the glomeruli. This part of the kidney function loss, that is, the actual inflammation, may not necessarily be permanent. This is why reducing the inflammation (and consequently the proteinuria) with oral steroids (such as prednisone) may reduce serum creatinine. But this is not the same as removing the cause of the IgAN in the first place, that is, the IgA deposits in the mesangial areas of the glomeruli. These continue to slowly and gradually build-up, and so, the IgAN continues even if there isn't much active inflammation. Another aspect of IgAN is that those who don't have these problems with heavy proteinuria may eventually get to the point of kidney failure anyway. So, some people may be treated with courses of prednisone, and some may not. The part of the disease that eventually causes kidney failure is the deposits of IgA in the mesangium of each glomeruli. This seems to happen no matter how much or how little proteinuria the person has. I'm not sure if that makes it easier to understand, but I hope it does. Pierre Re: when did you start prednisone? > > Ali, > The way my neph described it is this: The prednisone reduces the > inflammation in the kidneys by reducing the amount of protein you are > spilling, the reduction of inflammation is what causes your creatinine level > to drop a bit, if your protein spill increases, the inflammation increases, > and therefore so does your creatinine level. This is why some people see a > significant drop in their serum creatinine levels on prednisone, it's from > the reduction of inflammation not any healing properties of the drug. > > Does that make sense? My creatinine dropped because my protein level > dropped causing less inflammation to my kidneys which allows them to filter > better short term. Now that my protein level is on the rise again my > creatinine level is coming back up most likely due to increased inflammation > in the kidneys. > > Hope that helps... > Amy G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Pierre, That is a fantastic explanation! Thank you so much for taking the time to describe the mechanics of what is happening in our kidneys. In a message dated 11/4/2004 1:10:54 PM Pacific Standard Time, pgl-groups@... writes: > I know all this sounds really confusing, but, especially for the newbies in > the group, IgAN isn't the same in everyone. The primary problem caused by > IgAN is not really inflammation. It's IgA immune complexes (big proteins) > being deposited in the mesangium of the glomeruli and clogging up the > glomeruli to the point that they become non-functional. The glomeruli are > little clumps of tiny blood vessel that act as the filters in the kidneys. > Each glomerulus has a kind of structure that keeps this little clump of > blood vessels together. I'm oversimplifying a bit, but the space around > these blood vessels in each glomerulus is called the " mesangium " . Somehow, > and nobody really knows why this happens, the IgA complexes, which are > really large proteins that circulate in the blood (of everyone, not just > people with IgAN) are deposited in there and they get trapped. Eventually, > the mesangium in each of the million or so glomeruli in each kidney expands > because of this (literally filling up with IgA proteins), and this > eventually squeezes the little blood vessels until they filter less and > less. This is the basic disease process that is the essence of IgAN. > > Now, in some people more than in others, the presence of these IgA proteins > in the mesangium seems to lead to inflammation of the glomeruli's blood > vessels themselves. This is basically what causes proteinuria, and the blood > in the urine. Some people have little inflammation, some have a lot. It > depends on the individual. Those who have more of this inflammation tend to > have heavier proteinuria. This inflammation itself can cause some loss of > kidney function over and above that caused by the IgAN process in the > mesangial areas of the glomeruli. This part of the kidney function loss, > that is, the actual inflammation, may not necessarily be permanent. This is > why reducing the inflammation (and consequently the proteinuria) with oral > steroids (such as prednisone) may reduce serum creatinine. But this is not > the same as removing the cause of the IgAN in the first place, that is, the > IgA deposits in the mesangial areas of the glomeruli. These continue to > slowly and gradually build-up, and so, the IgAN continues even if there > isn't much active inflammation. > > Another aspect of IgAN is that those who don't have these problems with > heavy proteinuria may eventually get to the point of kidney failure anyway. > So, some people may be treated with courses of prednisone, and some may not. > The part of the disease that eventually causes kidney failure is the > deposits of IgA in the mesangium of each glomeruli. This seems to happen no > matter how much or how little proteinuria the person has. > > I'm not sure if that makes it easier to understand, but I hope it does. > > Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Pierre, I ditto !! That truely is the best explanation I've ever heard regarding Ig A, inflammation and proteinuria. Thanks for this " save for sure " explanation. Bonnie W4JC@... wrote: Pierre, That is a fantastic explanation! Thank you so much for taking the time to describe the mechanics of what is happening in our kidneys. In a message dated 11/4/2004 1:10:54 PM Pacific Standard Time, pgl-groups@... writes: > I know all this sounds really confusing, but, especially for the newbies in > the group, IgAN isn't the same in everyone. The primary problem caused by > IgAN is not really inflammation. It's IgA immune complexes (big proteins) > being deposited in the mesangium of the glomeruli and clogging up the > glomeruli to the point that they become non-functional. The glomeruli are > little clumps of tiny blood vessel that act as the filters in the kidneys. > Each glomerulus has a kind of structure that keeps this little clump of > blood vessels together. I'm oversimplifying a bit, but the space around > these blood vessels in each glomerulus is called the " mesangium " . Somehow, > and nobody really knows why this happens, the IgA complexes, which are > really large proteins that circulate in the blood (of everyone, not just > people with IgAN) are deposited in there and they get trapped. Eventually, > the mesangium in each of the million or so glomeruli in each kidney expands > because of this (literally filling up with IgA proteins), and this > eventually squeezes the little blood vessels until they filter less and > less. This is the basic disease process that is the essence of IgAN. > > Now, in some people more than in others, the presence of these IgA proteins > in the mesangium seems to lead to inflammation of the glomeruli's blood > vessels themselves. This is basically what causes proteinuria, and the blood > in the urine. Some people have little inflammation, some have a lot. It > depends on the individual. Those who have more of this inflammation tend to > have heavier proteinuria. This inflammation itself can cause some loss of > kidney function over and above that caused by the IgAN process in the > mesangial areas of the glomeruli. This part of the kidney function loss, > that is, the actual inflammation, may not necessarily be permanent. This is > why reducing the inflammation (and consequently the proteinuria) with oral > steroids (such as prednisone) may reduce serum creatinine. But this is not > the same as removing the cause of the IgAN in the first place, that is, the > IgA deposits in the mesangial areas of the glomeruli. These continue to > slowly and gradually build-up, and so, the IgAN continues even if there > isn't much active inflammation. > > Another aspect of IgAN is that those who don't have these problems with > heavy proteinuria may eventually get to the point of kidney failure anyway. > So, some people may be treated with courses of prednisone, and some may not. > The part of the disease that eventually causes kidney failure is the > deposits of IgA in the mesangium of each glomeruli. This seems to happen no > matter how much or how little proteinuria the person has. > > I'm not sure if that makes it easier to understand, but I hope it does. > > Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Thanks for the great run down, as always, Pierre! I'm hanging on to this post. ) Amy G. Re: when did you start prednisone? > > > > > > Ali, > > The way my neph described it is this: The prednisone reduces the > > inflammation in the kidneys by reducing the amount of protein you are > > spilling, the reduction of inflammation is what causes your creatinine > level > > to drop a bit, if your protein spill increases, the inflammation > increases, > > and therefore so does your creatinine level. This is why some people see > a > > significant drop in their serum creatinine levels on prednisone, it's from > > the reduction of inflammation not any healing properties of the drug. > > > > Does that make sense? My creatinine dropped because my protein level > > dropped causing less inflammation to my kidneys which allows them to > filter > > better short term. Now that my protein level is on the rise again my > > creatinine level is coming back up most likely due to increased > inflammation > > in the kidneys. > > > > Hope that helps... > > Amy G. > > > > > > 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 November 5, 2004 Report Share Posted November 5, 2004 Pierre: Thanks so much for this post. I'm going to show it to my family so hopefull they can understand this disease a little better. It's been one of those things that I " kind of " understand, but have an awful time explaining. One question I have is what are crescents? I have seen posts in the past about this, but do not know exactly what they are. When I had my biopsy it did show crescents. My biopsy experience was very bad and therefore I haven't shared it, as it seems to not be the norm and I do not like to scare people unnecessarily. They did the biopsy when my kidneys were very imflammed which caused a high risk for other problems, but fortunately I did not have any complications. Thanks. > I know all this sounds really confusing, but, especially for the newbies in > the group, IgAN isn't the same in everyone. The primary problem caused by > IgAN is not really inflammation. It's IgA immune complexes (big proteins) > being deposited in the mesangium of the glomeruli and clogging up the > glomeruli to the point that they become non-functional. The glomeruli are > little clumps of tiny blood vessel that act as the filters in the kidneys. > Each glomerulus has a kind of structure that keeps this little clump of > blood vessels together. I'm oversimplifying a bit, but the space around > these blood vessels in each glomerulus is called the " mesangium " . Somehow, > and nobody really knows why this happens, the IgA complexes, which are > really large proteins that circulate in the blood (of everyone, not just > people with IgAN) are deposited in there and they get trapped. Eventually, > the mesangium in each of the million or so glomeruli in each kidney expands > because of this (literally filling up with IgA proteins), and this > eventually squeezes the little blood vessels until they filter less and > less. This is the basic disease process that is the essence of IgAN. > > Now, in some people more than in others, the presence of these IgA proteins > in the mesangium seems to lead to inflammation of the glomeruli's blood > vessels themselves. This is basically what causes proteinuria, and the blood > in the urine. Some people have little inflammation, some have a lot. It > depends on the individual. Those who have more of this inflammation tend to > have heavier proteinuria. This inflammation itself can cause some loss of > kidney function over and above that caused by the IgAN process in the > mesangial areas of the glomeruli. This part of the kidney function loss, > that is, the actual inflammation, may not necessarily be permanent. This is > why reducing the inflammation (and consequently the proteinuria) with oral > steroids (such as prednisone) may reduce serum creatinine. But this is not > the same as removing the cause of the IgAN in the first place, that is, the > IgA deposits in the mesangial areas of the glomeruli. These continue to > slowly and gradually build-up, and so, the IgAN continues even if there > isn't much active inflammation. > > Another aspect of IgAN is that those who don't have these problems with > heavy proteinuria may eventually get to the point of kidney failure anyway. > So, some people may be treated with courses of prednisone, and some may not. > The part of the disease that eventually causes kidney failure is the > deposits of IgA in the mesangium of each glomeruli. This seems to happen no > matter how much or how little proteinuria the person has. > > I'm not sure if that makes it easier to understand, but I hope it does. > > Pierre > > Re: when did you start prednisone? > > > > > > Ali, > > The way my neph described it is this: The prednisone reduces the > > inflammation in the kidneys by reducing the amount of protein you are > > spilling, the reduction of inflammation is what causes your creatinine > level > > to drop a bit, if your protein spill increases, the inflammation > increases, > > and therefore so does your creatinine level. This is why some people see > a > > significant drop in their serum creatinine levels on prednisone, it's from > > the reduction of inflammation not any healing properties of the drug. > > > > Does that make sense? My creatinine dropped because my protein level > > dropped causing less inflammation to my kidneys which allows them to > filter > > better short term. Now that my protein level is on the rise again my > > creatinine level is coming back up most likely due to increased > inflammation > > in the kidneys. > > > > Hope that helps... > > Amy G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Hi , I had that question for a long time too! The best description I have seen for crescents is " fibrosis interstitial material " . From what I read, I visualized crud between the cells. Cy Re: when did you start prednisone? > > > > > > > > > > Ali, > > > The way my neph described it is this: The prednisone reduces > the > > > inflammation in the kidneys by reducing the amount of protein you > are > > > spilling, the reduction of inflammation is what causes your > creatinine > > level > > > to drop a bit, if your protein spill increases, the inflammation > > increases, > > > and therefore so does your creatinine level. This is why some > people see > > a > > > significant drop in their serum creatinine levels on prednisone, > it's from > > > the reduction of inflammation not any healing properties of the > drug. > > > > > > Does that make sense? My creatinine dropped because my protein > level > > > dropped causing less inflammation to my kidneys which allows them > to > > filter > > > better short term. Now that my protein level is on the rise > again my > > > creatinine level is coming back up most likely due to increased > > inflammation > > > in the kidneys. > > > > > > Hope that helps... > > > Amy G. > > > > > > > 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 November 8, 2004 Report Share Posted November 8, 2004 Thanks Pierre, I finally understand it. Sophia > I know all this sounds really confusing, but, especially for the newbies in > the group, IgAN isn't the same in everyone. The primary problem caused by > IgAN is not really inflammation. It's IgA immune complexes (big proteins) > being deposited in the mesangium of the glomeruli and clogging up the > glomeruli to the point that they become non-functional. The glomeruli are > little clumps of tiny blood vessel that act as the filters in the kidneys. > Each glomerulus has a kind of structure that keeps this little clump of > blood vessels together. I'm oversimplifying a bit, but the space around > these blood vessels in each glomerulus is called the " mesangium " . Somehow, > and nobody really knows why this happens, the IgA complexes, which are > really large proteins that circulate in the blood (of everyone, not just > people with IgAN) are deposited in there and they get trapped. Eventually, > the mesangium in each of the million or so glomeruli in each kidney expands > because of this (literally filling up with IgA proteins), and this > eventually squeezes the little blood vessels until they filter less and > less. This is the basic disease process that is the essence of IgAN. > > Now, in some people more than in others, the presence of these IgA proteins > in the mesangium seems to lead to inflammation of the glomeruli's blood > vessels themselves. This is basically what causes proteinuria, and the blood > in the urine. Some people have little inflammation, some have a lot. It > depends on the individual. Those who have more of this inflammation tend to > have heavier proteinuria. This inflammation itself can cause some loss of > kidney function over and above that caused by the IgAN process in the > mesangial areas of the glomeruli. This part of the kidney function loss, > that is, the actual inflammation, may not necessarily be permanent. This is > why reducing the inflammation (and consequently the proteinuria) with oral > steroids (such as prednisone) may reduce serum creatinine. But this is not > the same as removing the cause of the IgAN in the first place, that is, the > IgA deposits in the mesangial areas of the glomeruli. These continue to > slowly and gradually build-up, and so, the IgAN continues even if there > isn't much active inflammation. > > Another aspect of IgAN is that those who don't have these problems with > heavy proteinuria may eventually get to the point of kidney failure anyway. > So, some people may be treated with courses of prednisone, and some may not. > The part of the disease that eventually causes kidney failure is the > deposits of IgA in the mesangium of each glomeruli. This seems to happen no > matter how much or how little proteinuria the person has. > > I'm not sure if that makes it easier to understand, but I hope it does. > > Pierre > > Re: when did you start prednisone? > > > > > > Ali, > > The way my neph described it is this: The prednisone reduces the > > inflammation in the kidneys by reducing the amount of protein you are > > spilling, the reduction of inflammation is what causes your creatinine > level > > to drop a bit, if your protein spill increases, the inflammation > increases, > > and therefore so does your creatinine level. This is why some people see > a > > significant drop in their serum creatinine levels on prednisone, it's from > > the reduction of inflammation not any healing properties of the drug. > > > > Does that make sense? My creatinine dropped because my protein level > > dropped causing less inflammation to my kidneys which allows them to > filter > > better short term. Now that my protein level is on the rise again my > > creatinine level is coming back up most likely due to increased > inflammation > > in the kidneys. > > > > Hope that helps... > > Amy G. Quote Link to comment Share on other sites More sharing options...
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