Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 Hi all, I was the person a while ago who had tendonitis (not joint pain) that suddenly came on in a bunch of places, unrelated to sports injury. I'm now seeing a rheumatologist along wih my nephrologist. It turns out that my IgA has worsened parallel to the tendonitis, so they believe there is a relationship between these inflammations; I don't understand it quite (don't think anyone really does) but what these drs. seem to be suggesting is that the immune complexes that build up in the kidneys of people with IgA (or maybe just me!) can also start building up in, say, tendons. I'm now back on the prednisone train and it really helps to read of those of you who are living with these yummy side effects too. The rheumatologist wants to rebiopsy--I'll find out next week if that's going to happen. Questions--I'll ask my nephrologist these, but am wondering if anyone has any insight: 1) if your proteinuria has been low but then doubles (and is still under the nephrotic syndrome level where they really go after it) is it bad in the long term to just accept the higher level, knowing that it's leading to scarring, etc? 2) Is there any point in rebiopsying when it seems all it will show is that yes, there's increased inflammation? 3) Any suggestions for questions to ask to try to get a sense of future prognosis specific to your case from your nephrologist? 4) For anyone with experience with prednisone, if you were having edema from the proteinuria before going on the drug, did it get worse with the steroid? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 Hello regarding your question NO.3 of prognosis ,, here is a paragraph I copied from www.igan.org which is relevant :--------------------------------------------------------------------------- --------------------------------------------------------------------------- About 20-40 percent of IgAN patients develop end stage kidney failure within 20 years after the disease becomes apparent. Those patients who have an increased level of creatinine in their blood at the time of their diagnosis are more likely to develop chronic kidney failure. It is harder to predict which of the patients who have normal levels of creatinine at the time of diagnosis will develop kidney failure. In general, a poorer prognosis is expected for those patients who have high blood pressure, a loss of more than 2 grams of protein a day in their urine, and a significant amount of damage (especially with " crescents " ) present in their biopsy specimen ---------------------------------------------------------------------------- ---------------------------------------------------------------------------- - I think the part about 2gm of protien per day is important ,, well my neph said as much please let me know if this is of use to you Cheers from Danny London UK update > Hi all, > > I was the person a while ago who had tendonitis (not joint pain) that > suddenly came on in a bunch of places, unrelated to sports injury. > I'm > now seeing a rheumatologist along wih my nephrologist. It turns out > that my IgA has worsened parallel to the tendonitis, so they believe > there is a relationship between these inflammations; I don't > understand > it quite (don't think anyone really does) but what these drs. seem to > be suggesting is that the immune complexes that build up in the > kidneys > of people with IgA (or maybe just me!) can also start building up in, > say, tendons. > > I'm now back on the prednisone train and it really helps to read of > those of you who are living with these yummy side effects too. The > rheumatologist wants to rebiopsy--I'll find out next week if that's > going to happen. > > Questions--I'll ask my nephrologist these, but am wondering if anyone > has any insight: > > 1) if your proteinuria has been low but then doubles (and is still > under the nephrotic syndrome level where they really go after it) is > it > bad in the long term to just accept the higher level, knowing that > it's > leading to scarring, etc? > > 2) Is there any point in rebiopsying when it seems all it will show > is > that yes, there's increased inflammation? > > 3) Any suggestions for questions to ask to try to get a sense of > future prognosis specific to your case from your nephrologist? > > 4) For anyone with experience with prednisone, if you were having > edema from the proteinuria before going on the drug, did it get worse > with the steroid? > > Thanks! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 I'm only going to touch on one. I had mild edema in one ankle before I went on the prednisone. Then for the first week or so, I had massive edema in both legs, all the way up through the knees. Sometimes I could barely walk. I was also on a diuretic, and started other meds at the exact same time. It went away. All of it. Within about 1-2 weeks after it started. My neph did not belive that it was caused by teh prednisone, but who knows it could have been any of the three or four meds I went on. All I know is that afterwards, i had no problems, or occassionally the mild ankle edema was back - but only occassionally. Ingrid > Hi all, > > I was the person a while ago who had tendonitis (not joint pain) that > suddenly came on in a bunch of places, unrelated to sports injury. > I'm > now seeing a rheumatologist along wih my nephrologist. It turns out > that my IgA has worsened parallel to the tendonitis, so they believe > there is a relationship between these inflammations; I don't > understand > it quite (don't think anyone really does) but what these drs. seem to > be suggesting is that the immune complexes that build up in the > kidneys > of people with IgA (or maybe just me!) can also start building up in, > say, tendons. > > I'm now back on the prednisone train and it really helps to read of > those of you who are living with these yummy side effects too. The > rheumatologist wants to rebiopsy--I'll find out next week if that's > going to happen. > > Questions--I'll ask my nephrologist these, but am wondering if anyone > has any insight: > > 1) if your proteinuria has been low but then doubles (and is still > under the nephrotic syndrome level where they really go after it) is > it > bad in the long term to just accept the higher level, knowing that > it's > leading to scarring, etc? > > 2) Is there any point in rebiopsying when it seems all it will show > is > that yes, there's increased inflammation? > > 3) Any suggestions for questions to ask to try to get a sense of > future prognosis specific to your case from your nephrologist? > > 4) For anyone with experience with prednisone, if you were having > edema from the proteinuria before going on the drug, did it get worse > with the steroid? > > Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 Nice to hear from you again, although of course, it would be nicer if your condition were improving. I've inserted my comments after some of your questions below. Pierre update > > Questions--I'll ask my nephrologist these, but am wondering if anyone > has any insight: > > 1) if your proteinuria has been low but then doubles (and is still > under the nephrotic syndrome level where they really go after it) is > it bad in the long term to just accept the higher level, knowing that > it's leading to scarring, etc? It becomes a matter of judgement on the part of your doctor and you. You have to balance the disadvantages of drugs like prednisone against the possible benefits. You don't need to have heavy proteinuria to have glomerular scarring from IgAN. I had plenty of scarring at the time of my biopsy in 1993, and my proteinuria had always been fairly mild (almost always under 1 gram per day, even now). > 2) Is there any point in rebiopsying when it seems all it will show > is > that yes, there's increased inflammation? Not normally, unless it's as part of a study. It depends what they expect to find out. Personally, I don't see much point of a repeat biopsy for the usual chronic IgAN. What will they do with the information they get from it, specifically? > 3) Any suggestions for questions to ask to try to get a sense of > future prognosis specific to your case from your nephrologist? Unless you have a rapidly progressive type of IgAN, they can only guesstimate, and even the guesstimate will likely be very vague. We had a discussion once about prognostic indicators. One of the main ones they talk about is whether the serum creatinine is elevated at the time of diagnosis or not. Well, big deal. If it's not, eventually it will be, no matter what. So if that's the criteria, the prognosis would have to be the same for everybody. In other words, the prognosis worsens as you go along with IgAN, simply because all the standard indicators tend to worsen over time (a long, long time for some). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 All, What does the prednisone do to the kidneys? How does it decrease the protein loss? I'm at 7.6 grams per day and my neph has not talked about prednisone yet. Rick. Re: update I was spiling 8g at first, then the prednisone brought it down to 4, and now I'm at about 0.5g. It took three months though to see the change. Also, my face didn't start swelling until after three months, and just now (on 5mg/day) am I starting to see a decrease in that swelling. And the edema has n ot come back at all. So even with the nasty side effects(you can see some of my other posts/complaints), it is definitely working for me. ingrid > > > Hi all, > > > > > > I was the person a while ago who had tendonitis (not joint pain) > > that > > > suddenly came on in a bunch of places, unrelated to sports > injury. > > > I'm > > > now seeing a rheumatologist along wih my nephrologist. It turns > > out > > > that my IgA has worsened parallel to the tendonitis, so they > > believe > > > there is a relationship between these inflammations; I don't > > > understand > > > it quite (don't think anyone really does) but what these drs. > seem > > to > > > be suggesting is that the immune complexes that build up in the > > > kidneys > > > of people with IgA (or maybe just me!) can also start building up > > in, > > > say, tendons. > > > > > > I'm now back on the prednisone train and it really helps to read > of > > > those of you who are living with these yummy side effects too. > The > > > rheumatologist wants to rebiopsy--I'll find out next week if > that's > > > going to happen. > > > > > > Questions--I'll ask my nephrologist these, but am wondering if > > anyone > > > has any insight: > > > > > > 1) if your proteinuria has been low but then doubles (and is > still > > > under the nephrotic syndrome level where they really go after it) > is > > > it > > > bad in the long term to just accept the higher level, knowing that > > > it's > > > leading to scarring, etc? > > > > > > 2) Is there any point in rebiopsying when it seems all it will > show > > > is > > > that yes, there's increased inflammation? > > > > > > 3) Any suggestions for questions to ask to try to get a sense of > > > future prognosis specific to your case from your nephrologist? > > > > > > 4) For anyone with experience with prednisone, if you were > having > > > edema from the proteinuria before going on the drug, did it get > > worse > > > with the steroid? > > > > > > Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 Prednisone is a steroid. The way it was explained to me is that if you have crescents, that's like scar tissue, and beyond repair. As the protein continues to leak through the kidney, it's doing more damage. There are parts that are not completely gone yet, and the steroid will help regenerate them. If the parts that are damaged but not dead yet can come back, they can go back to work helping to filter out the protein. Also if they are healthy again the protein leaking through has to start all over damaging them so it takes a whole lot longer. That's my very non-scientific understanding of what it does. Every neph has their own deal, and I'm sure yours has your every best interest at heart, but I'm sure they wouldn't mind you asking them about prednisone too. They may not have mentioned it if you have other health issues that would make it not appropriate for you in particular. As you can see, many of us have been on it, but it's not without side effects and long term effects. No one just stays on it, we take it for a while to help the kidneys, and then get back off before it damages the rest of us. I think the long term effects involve osteoporosis, but only over a really long time. I started at 10 grams and just found out yesterday that 2 years later I'm down to 2 grams!!! Good news for me. Again, not scientific, but I hope this helps. - Re: update I was spiling 8g at first, then the prednisone brought it down to 4, and now I'm at about 0.5g. It took three months though to see the change. Also, my face didn't start swelling until after three months, and just now (on 5mg/day) am I starting to see a decrease in that swelling. And the edema has n ot come back at all. So even with the nasty side effects(you can see some of my other posts/complaints), it is definitely working for me. ingrid > > > Hi all, > > > > > > I was the person a while ago who had tendonitis (not joint pain) > > that > > > suddenly came on in a bunch of places, unrelated to sports > injury. > > > I'm > > > now seeing a rheumatologist along wih my nephrologist. It turns > > out > > > that my IgA has worsened parallel to the tendonitis, so they > > believe > > > there is a relationship between these inflammations; I don't > > > understand > > > it quite (don't think anyone really does) but what these drs. > seem > > to > > > be suggesting is that the immune complexes that build up in the > > > kidneys > > > of people with IgA (or maybe just me!) can also start building up > > in, > > > say, tendons. > > > > > > I'm now back on the prednisone train and it really helps to read > of > > > those of you who are living with these yummy side effects too. > The > > > rheumatologist wants to rebiopsy--I'll find out next week if > that's > > > going to happen. > > > > > > Questions--I'll ask my nephrologist these, but am wondering if > > anyone > > > has any insight: > > > > > > 1) if your proteinuria has been low but then doubles (and is > still > > > under the nephrotic syndrome level where they really go after it) > is > > > it > > > bad in the long term to just accept the higher level, knowing that > > > it's > > > leading to scarring, etc? > > > > > > 2) Is there any point in rebiopsying when it seems all it will > show > > > is > > > that yes, there's increased inflammation? > > > > > > 3) Any suggestions for questions to ask to try to get a sense of > > > future prognosis specific to your case from your nephrologist? > > > > > > 4) For anyone with experience with prednisone, if you were > having > > > edema from the proteinuria before going on the drug, did it get > > worse > > > with the steroid? > > > > > > Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 Thanks . Your explanation was very good. Rick. Re: Re: update Prednisone is a steroid. The way it was explained to me is that if you have crescents, that's like scar tissue, and beyond repair. As the protein continues to leak through the kidney, it's doing more damage. There are parts that are not completely gone yet, and the steroid will help regenerate them. If the parts that are damaged but not dead yet can come back, they can go back to work helping to filter out the protein. Also if they are healthy again the protein leaking through has to start all over damaging them so it takes a whole lot longer. That's my very non-scientific understanding of what it does. Every neph has their own deal, and I'm sure yours has your every best interest at heart, but I'm sure they wouldn't mind you asking them about prednisone too. They may not have mentioned it if you have other health issues that would make it not appropriate for you in particular. As you can see, many of us have been on it, but it's not without side effects and long term effects. No one just stays on it, we take it for a while to help the kidneys, and then get back off before it damages the rest of us. I think the long term effects involve osteoporosis, but only over a really long time. I started at 10 grams and just found out yesterday that 2 years later I'm down to 2 grams!!! Good news for me. Again, not scientific, but I hope this helps. - Re: update I was spiling 8g at first, then the prednisone brought it down to 4, and now I'm at about 0.5g. It took three months though to see the change. Also, my face didn't start swelling until after three months, and just now (on 5mg/day) am I starting to see a decrease in that swelling. And the edema has n ot come back at all. So even with the nasty side effects(you can see some of my other posts/complaints), it is definitely working for me. ingrid > > > Hi all, > > > > > > I was the person a while ago who had tendonitis (not joint pain) > > that > > > suddenly came on in a bunch of places, unrelated to sports > injury. > > > I'm > > > now seeing a rheumatologist along wih my nephrologist. It turns > > out > > > that my IgA has worsened parallel to the tendonitis, so they > > believe > > > there is a relationship between these inflammations; I don't > > > understand > > > it quite (don't think anyone really does) but what these drs. > seem > > to > > > be suggesting is that the immune complexes that build up in the > > > kidneys > > > of people with IgA (or maybe just me!) can also start building up > > in, > > > say, tendons. > > > > > > I'm now back on the prednisone train and it really helps to read > of > > > those of you who are living with these yummy side effects too. > The > > > rheumatologist wants to rebiopsy--I'll find out next week if > that's > > > going to happen. > > > > > > Questions--I'll ask my nephrologist these, but am wondering if > > anyone > > > has any insight: > > > > > > 1) if your proteinuria has been low but then doubles (and is > still > > > under the nephrotic syndrome level where they really go after it) > is > > > it > > > bad in the long term to just accept the higher level, knowing that > > > it's > > > leading to scarring, etc? > > > > > > 2) Is there any point in rebiopsying when it seems all it will > show > > > is > > > that yes, there's increased inflammation? > > > > > > 3) Any suggestions for questions to ask to try to get a sense of > > > future prognosis specific to your case from your nephrologist? > > > > > > 4) For anyone with experience with prednisone, if you were > having > > > edema from the proteinuria before going on the drug, did it get > > worse > > > with the steroid? > > > > > > Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 , Sorry your appointment didn't go well. My doc won't give me anything else for pain either. Its very frustrating isn't it. I'm downing the Tylenol#3 right now. I hope you get some good days. Norma -- update Hi all! Well I had my appt with the rheummy today. It was completely a waste of time and money! He told me I have a chronic illness that causes pain (DUH) and that there is nothing I can do about it. No advise on coping and no meds!! I was horrified and started crying before I even made it out the door. Thought I would just fill you in on my nightmare. My hubby did give me a few injections though that my pcp ordered for me. They were for Tordal which helps some, but not enough that I can do anything!! Thank you all for your kind thoughts through my rough time. I hope this will pass soon and I can be more supportive for all of you. Hugs to you all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 One thing good about these posts like this is I realize just how wonderful my doctor is. He keeps me basically pain free; well as good as we can. Margaret,mom to the monsters update Hi all! Well I had my appt with the rheummy today. It was completely a waste of time and money! He told me I have a chronic illness that causes pain (DUH) and that there is nothing I can do about it. No advise on coping and no meds!! I was horrified and started crying before I even made it out the door. Thought I would just fill you in on my nightmare. My hubby did give me a few injections though that my pcp ordered for me. They were for Tordal which helps some, but not enough that I can do anything!! Thank you all for your kind thoughts through my rough time. I hope this will pass soon and I can be more supportive for all of you. Hugs to you all, 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 {{{{{{{TANYA}}}}}}}} I'm so sorry you didn't get what you expected from the rheumy. He doesn't sound like a very good doctor. Are there any more rheumatologists in your area you could try? Bless your heart. --Leigh -- update Hi all! Well I had my appt with the rheummy today. It was completely a waste of time and money! He told me I have a chronic illness that causes pain (DUH) and that there is nothing I can do about it. No advise on coping and no meds!! I was horrified and started crying before I even made it out the door. Thought I would just fill you in on my nightmare. My hubby did give me a few injections though that my pcp ordered for me. They were for Tordal which helps some, but not enough that I can do anything!! Thank you all for your kind thoughts through my rough time. I hope this will pass soon and I can be more supportive for all of you. Hugs to you all, Quote Link to comment Share on other sites More sharing options...
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