Guest guest Posted February 14, 2001 Report Share Posted February 14, 2001 Welcome to the group. Nephs never seem bothered by that, but fatigue sure is a common complaint. I'm on disability now, but my last few years of work I was really dragging myself, and missing days like you. But we're all different. I have the opposite of you, high creatinine and moderate proteinuria. Of course, it could also be because I'm getting older. There really is no medical explanation I can give you, because even the nephrologists can't really explain it, especially when the IgAN is relatively mild and there is plenty of kidney function left. But, along with flank pain, extraordinary fatigue is probably the single most common complaint. Even young people in their early and mid-20's seem to experience it. So at least you're not alone. Of course, it's understandable that our nephs aren't overly concerned about it, since there isn't much they can do about it anyway. Pierre IGA > > I was diagnosed with Igan 3 years ago and have significant > proteinuria but with a normal serum creatine at present. > I am always tired yet my neph does not seem that bothered and has > neither pursued or explained to me if this is due to IGA. > My work is starting to suffer as I seem to have started a pattern of > 1 or 2 days off a month. > Can any one clarify ????????? > Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 I think we are all tired - some days more than others. I find that if I eat less protein I feel more energetic, and a friend of mine says that she feels better if she doesn't have sugar. I also find that if I rest a lot I feel worse so I try to have little relaxes like a hot bath for an hour and stuff like that. From: petrozzi2001@... Reply-To: iga-nephropathy To: iga-nephropathy Subject: IGA Date: Thu, 15 Feb 2001 01:02:26 -0000 I was diagnosed with Igan 3 years ago and have significant proteinuria but with a normal serum creatine at present. I am always tired yet my neph does not seem that bothered and has neither pursued or explained to me if this is due to IGA. My work is starting to suffer as I seem to have started a pattern of 1 or 2 days off a month. Can any one clarify ????????? Thanks _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 I too complain to my nephrologist about beeing tired all the time. Actually, that's my only complaint regarding IgA for the moment. Since my kidney function isn't bad enough to be causing tiredness my neph doesn't have an answer either. After I had been complaining for about half a year some tests were actually made to see what might be the problem. We examined my physical fitness but that showed that I was in normal shape. Digestion turned out to be ok too. I did have anemia, but with the help of iron and EPO injections that have been corrected and I'm in the normal range now - but still tired. I used to think that my tiredness was due to the reduced kidney function. But that's not it either. When someone donates a kidney that person's creatinine almost doubles (from a normal of 1.0 to approx. 1.8). And since the donor isn't left tired the rest of his/hers life a creatinine of 1.8 shouldn't be a problem. I, as well as other on this board, have creatinines below 1.8 and are still complaining. Some of the things left that perhaps could be causing this is protein in urine, kidney inflammation and medicine. Does anyone know if successfully transplanted IgA patients experience the same unexplained tiredness as we are? It's interesting what writes about minimizing protein intake. , do you have a suggestion how one could perform an experiment to see if that might help? If you start a low protein diet, how long would it take before you should start noticing any difference (if there's going to be a difference at all)? Sorry for providing more answers that questions /Jens > I think we are all tired - some days more than others. I find that if I eat > less protein I feel more energetic, and a friend of mine says that she feels > better if she doesn't have sugar. I also find that if I rest a lot I feel > worse so I try to have little relaxes like a hot bath for an hour and stuff > like that. > > > > From: petrozzi2001@y... > Reply-To: iga-nephropathy@y... > To: iga-nephropathy@y... > Subject: IGA > Date: Thu, 15 Feb 2001 01:02:26 -0000 > > > I was diagnosed with Igan 3 years ago and have significant > proteinuria but with a normal serum creatine at present. > I am always tired yet my neph does not seem that bothered and has > neither pursued or explained to me if this is due to IGA. > My work is starting to suffer as I seem to have started a pattern of > 1 or 2 days off a month. > Can any one clarify ????????? > Thanks > > > ______________________________________________________________________ ___ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 Hi Jens. I am experimenting all the time! I have found that what I eat today will have an effect over the next few days. I had a burger yesterday (just had to) today I feel achey in the kidneys, urine's a bit foamy and I feel a little more tired than background tired. I should probably be more scientific and do without for a few weeks and then gradually bring it back in, but I am trying to listen to my body and eat what seems right at the time. A friend of mine who is a general practise nurse believes that the kidneys releasing the protein causes the pain, and that people who are in pain all the time are often quite fatigued. I think that theory sums up me quite well. _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 Hi /Jens I hate to be a bore, but before embarking on any sort of diet, I would strongly recommend that you seek guidance from your Nephrologist or medical advisor. Sudden dietary changes can have some serious consequences and should not be taken up without some input from them. Purely just my point of view, and of course at the end of the day it is up to you. But I would advise caution. Tiredness can be due to anemia, I am being treated for anemia, iron pills etc (which I have to say give me chronic constipation), so I have to take mild laxatives to help with this point. I have grumbled to my Neph about this tiredness thing, and he has no specific answers for me, other than he hears it a lot from IGAN patients, whether they be mild or severe sufferers. I think we just have to chalk this up as part of the course of the disease. Best wishes IGA > Date: Thu, 15 Feb 2001 01:02:26 -0000 > > > I was diagnosed with Igan 3 years ago and have significant > proteinuria but with a normal serum creatine at present. > I am always tired yet my neph does not seem that bothered and has > neither pursued or explained to me if this is due to IGA. > My work is starting to suffer as I seem to have started a pattern of > 1 or 2 days off a month. > Can any one clarify ????????? > Thanks > > > ______________________________________________________________________ ___ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 Hello Your protein level is pretty high. Last time i did a 24 urine collection, mine was 2.8 and my neph. started me on the ace inhib. and also omega 3 fish oils. We will find out if they are working in about 4 months. Are you still trying to have a baby? Robyn --- acmtp2001@... wrote: > Thanks to you all for replying to my questions. I've > learnt more about > igan from reading all your messages ( all 965 !! ) > than I have > from my neph over the last 3 years. > And as for the itching I'm on my 8th brand of > washing powder, I did > not realise that it was part of igan. > My protein level is 4.4, is that mild, medium or > high ? > When I reached this level he started me on Ace > Inhibitors which I > stopped 3months ago as I am trying for a baby. > I was on the Ace Inhibitors for 9months, I started > with 25mg then > 50mg,but it did not lower my protein. > Any thoughts as to why ????? > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 Make sure you have enough life insurance before you have children. My husband was turned down for life insurance after we had 2 kids. We've had to think about other ways of providing for the kids if he goes into kidney failure or on disability. Re: IGA > Hello > Your protein level is pretty high. Last time i did a > 24 urine collection, mine was 2.8 and my neph. started > me on the ace inhib. and also omega 3 fish oils. We > will find out if they are working in about 4 months. > Are you still trying to have a baby? > Robyn > --- acmtp2001@... wrote: > > Thanks to you all for replying to my questions. I've > > learnt more about > > igan from reading all your messages ( all 965 !! ) > > than I have > > from my neph over the last 3 years. > > And as for the itching I'm on my 8th brand of > > washing powder, I did > > not realise that it was part of igan. > > My protein level is 4.4, is that mild, medium or > > high ? > > When I reached this level he started me on Ace > > Inhibitors which I > > stopped 3months ago as I am trying for a baby. > > I was on the Ace Inhibitors for 9months, I started > > with 25mg then > > 50mg,but it did not lower my protein. > > Any thoughts as to why ????? > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 IgAN doesn't cause itching as such. It's the overall kidney failure that does, no matter what the actual kidney disease. It's caused by too much phosphorous build up in the blood. The solution is plain old non prescription calcium tablets (like some ordinary antacids). In pre-ESRD people, this usually happens as chronic kidney failure becomes more advanced. It's just itching, sort of all over, without any sign of rash. It can drive you nuts. Of course, lots of other things can cause itching too, including just thinking about it Proteinuria at 4.4 sounds rather high. Do you have any edema? Hypertension? Only steroids will bring that kind of level down, usually. The effect of ACE inhibitors on proteinuria is not that pronounced. It's not for acute cases, but more of a long term thing. Also, different people get different results, as with most drugs. Pierre IGA > Thanks to you all for replying to my questions. I've learnt more about > igan from reading all your messages ( all 965 !! ) than I have > from my neph over the last 3 years. > And as for the itching I'm on my 8th brand of washing powder, I did > not realise that it was part of igan. > My protein level is 4.4, is that mild, medium or high ? > When I reached this level he started me on Ace Inhibitors which I > stopped 3months ago as I am trying for a baby. > I was on the Ace Inhibitors for 9months, I started with 25mg then > 50mg,but it did not lower my protein. > Any thoughts as to why ????? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 Thanks for your concern , but I am experimenting under supervision. Reply-To: iga-nephropathy To: <iga-nephropathy > Subject: RE: Re: IGA Date: Thu, 15 Feb 2001 15:35:54 -0000 Hi /Jens I hate to be a bore, but before embarking on any sort of diet, I would strongly recommend that you seek guidance from your Nephrologist or medical advisor. Sudden dietary changes can have some serious consequences and should not be taken up without some input from them. Purely just my point of view, and of course at the end of the day it is up to you. But I would advise caution. Tiredness can be due to anemia, I am being treated for anemia, iron pills etc (which I have to say give me chronic constipation), so I have to take mild laxatives to help with this point. I have grumbled to my Neph about this tiredness thing, and he has no specific answers for me, other than he hears it a lot from IGAN patients, whether they be mild or severe sufferers. I think we just have to chalk this up as part of the course of the disease. Best wishes IGA > Date: Thu, 15 Feb 2001 01:02:26 -0000 > > > I was diagnosed with Igan 3 years ago and have significant > proteinuria but with a normal serum creatine at present. > I am always tired yet my neph does not seem that bothered and has > neither pursued or explained to me if this is due to IGA. > My work is starting to suffer as I seem to have started a pattern of > 1 or 2 days off a month. > Can any one clarify ????????? > Thanks > > > ______________________________________________________________________ ___ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 A nurse friend of mine sent me some test strips. + is less than 1g (bad), ++ is up to 3g (really bad), +++ up to 20g (really really bad), ++++ over 20g (really really really bad). My levels are a little less that yours and I have been described as high by trainee neph and medium by " real " neph. Others are probably described differently as well. My protein level is 4.4, is that mild, medium or high ? _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2001 Report Share Posted February 17, 2001 Mention it to your doctor next time Ginger. Itching is like fatigue. It's one of those things that " they " say only happens when kidney function has deteriorated to a certain point. But that point varies, and the doctors aren't the one's with the itch. You know, for many, many years, I was being a " man " . I would go to my appointment, and when the doc would ask how things are going, I would say " Great! " , or " Fine " -- always wanting to emphasize the positive I guess (and not wanting to sound like a hypochondriac). Now, I tell her about every single little symptom. If she says it's not caused by the kidney disease, I just accept it. If it's troublesome enough, I may spring it on my family doctor, or I may just deal with it on my own. As always, just because we have IgAN, it doesn't mean that we don't have all the other little complaints that everyone has, so sometimes, it just ain't the kidney disease. Pierre IGA > > > > > > > Thanks to you all for replying to my questions. I've learnt more about > > > igan from reading all your messages ( all 965 !! ) than I have > > > from my neph over the last 3 years. > > > And as for the itching I'm on my 8th brand of washing powder, I did > > > not realise that it was part of igan. > > > My protein level is 4.4, is that mild, medium or high ? > > > When I reached this level he started me on Ace Inhibitors which I > > > stopped 3months ago as I am trying for a baby. > > > I was on the Ace Inhibitors for 9months, I started with 25mg then > > > 50mg,but it did not lower my protein. > > > Any thoughts as to why ????? > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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