Guest guest Posted October 11, 2004 Report Share Posted October 11, 2004 a few more things have happened, two days, no flank pain, in fact, no flank anything, I don't have that constant nagging feeling deep inside that has accompanied me for years now. I've also noticed my psoriasis is subsiding, I've got it pretty bad in my scalp, I think that is due to no alcohol, as I've experienced that before. Haematuria took a dive the other day, I was so surprised I called my wife in to show her no bubbles! I think I overstepped the taste threshold but she is a nurse Bubbles are back now so maybe that was a false dawn. I've been web crawling again, and found the following on leaky guts, a charming topic, however one thing leapt off the page at me, fish oil decreases gut permeability, now when I was prescribed fish oil I was given some mumbo jumbo about it soothing kidneys, but he didn't know how it worked. It may be emulating the effect of the steroid treatment, this explains why in some it works, in others, nothing, as I do not believe we all have exactly the same cause, just the same symptom. Another pointer I have personally is family history of food intolerance. http://www.mdheal.org/leakygut.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2004 Report Share Posted October 11, 2004 I don't mean to sound discouraging or negative about it, but: A diet like that will probably give apparent improvement over a short period of time, but it can't be maintained over the long haul, as, unless you can eat a bunch of legumes and supplement with the appropriate B vitamins, you risk protein malnutrition in the longer term. This hitch with that is that if you happen to have a higher degree of chronic renal insufficiency, the potassium and phosphorus in legumes will become a problem. It reminds me of the only " treatment " that could really be proposed in the 1930's/40's for renal failure: the famous " rice diet " as practiced by Dr. Kempner at Duke University. That diet had to be started in a special centre with heavy supervision, and it was not possible to maintain health without eventually adding some meats and some fruit. The official " Rice Diet " is still in operation at Duke to this day, but not as a kidney failure diet. It's used for severe obesity, hypertension to some degree. You can still read about it as they have a website. Look for " Rice Diet " . Look, you can greatly improve your lab results if you were to stop eating completely. Unfortunately, it would be a short-lived cure, as you would die pretty quickly. For example, in a case of extreme, catastrophic emergency where dialysis was simply not possible, I could probably survive for some time by not eating anything with protein or potassium in it. Of course, I agree completely that it can't hurt to avoid more junky foods. Let us know what your nephrologist says. Pierre no rubbish diet > > > I'm a week into eating no rubbish... > > this was spurred on by several things, just feeling pretty unwell > being the main driver, plus a comment from my nephrologist that the > IGA we have problems with comes from the gut. I just happened to > have come across the patent for treatment using steroids in the gut > at the same time. > > no junk food, nothing out of a packet, no meat, no eggs, no dairy, > no wheat,no caffeine, no well you get the idea lots of water, > herbal tea (getting used to rooibosch) and veggies. > > first week was horrible, headaches, long drawn out grotty headaches, > presumably from caffeine withdrawl, I wasn't a heavy coffee drinker > but three or four cups a day. I generally felt yuk most of the > working week though. What a change this weekend, my energy levels > are up, blood pressure is down, every time I stand up, I get dizzy, > badly so earlier today. My eyes have cleared, and my wife informs > me my face has lost all puffiness and I smell less, you know man > smell, not BO PLUS the muggy head I have has gone, that's been > giving me real problems in work as I design software and stuff, I've > had a few meetings were I know I've been well below par. > > I'm seeing my nephro on weds, and will be very interested in my > serum creatinine etc and will of course be discussing the steroid > treatment. > > I could kill a nice steak, chips and a bottle of red wine though > > > > > > > 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 11, 2004 Report Share Posted October 11, 2004 Just be careful everyone. If you have any degree of chronic renal failure at all, eating very well in a way that would be fine for people without kidney disease could potentially lead to a dangerous build-up of potassium in a person who does have kidney disease and has lost some significant kidney function. In case you don't know this already, the only thing about chronic renal insufficiency that can kill you immediately is very elevated potassium. My advice and the official advice of this group is that you should NOT diet in any way without first consulting with your nephrologist. Everyone is different in how well their kidneys handle potassium, so there's no blanket statement that applies to all. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2004 Report Share Posted October 11, 2004 P.S. There are no reliable symptoms you can feel that can tell you your potassium is becoming dangerously elevated. Most people never feel anything at all until their heart stops or hopefully, a doctor happens to check their blood before that happens. People on dialysis learn to just trust their diet plan for this, because there's no other way to tell about potassium except by blood test and/or an electrocardiogram. Pierre Re: no rubbish diet > > Just be careful everyone. If you have any degree of chronic renal failure at > all, eating very well in a way that would be fine for people without kidney > disease could potentially lead to a dangerous build-up of potassium in a > person who does have kidney disease and has lost some significant kidney > function. In case you don't know this already, the only thing about chronic > renal insufficiency that can kill you immediately is very elevated > potassium. > > My advice and the official advice of this group is that you should NOT diet > in any way without first consulting with your nephrologist. Everyone is > different in how well their kidneys handle potassium, so there's no blanket > statement that applies to all. > > Pierre > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2004 Report Share Posted October 11, 2004 I'm not fooling myself, this IS temporary. I know that the health benefits are relatively speaking short term, I'm intending to phase things in and see what happens. Not PC especially in the UK but I shoot and fish, and I enjoy the products of my labours, I also do all the family cooking and really enjoy food, of all sorts, so I'm not intending to become some anaemic waif On the other hand I am going to watch what I eat much more closely than I have been, my serum creatinine hurtled upwards from a relatively benign low hundreds to nigh on 300 in 18 months, that scared the bejeesis outa me. It's only three years ago I was told IGAN would never be a serious problem for me, it would be there but would not cause ESRF, WRONG! That's a good point on the legumes pierre, I wasn't aware of that, and as for the rice diet, good grief, I think I'd rather be ill > I don't mean to sound discouraging or negative about it, but: > A diet like that will probably give apparent improvement over a short period > of time, but it can't be maintained over the long haul, as, unless Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2004 Report Share Posted October 11, 2004 ....particularly if you're on ACE inhibitors as many of us are, me included. again, I'm doing this as a temporary measure to find out if I have food intolerance/ leaky gut, sorry if I didn't make things clear. I have a lot of personal background in this that I base my ideas on, I haven't time to write it all down, and it would bore you all to tears anyway. > P.S. There are no reliable symptoms you can feel that can tell you your > potassium is becoming dangerously elevated. Most people never feel anything > at all until their heart stops or hopefully, a doctor happens to check their > blood before that happens. People on dialysis learn to just trust their diet > plan for this, because there's no other way to tell about potassium except > by blood test and/or an electrocardiogram. > Pierre > > Re: no rubbish diet > > > > > > Just be careful everyone. If you have any degree of chronic renal failure > at > > all, eating very well in a way that would be fine for people without > kidney > > disease could potentially lead to a dangerous build-up of potassium in a > > person who does have kidney disease and has lost some significant kidney > > function. In case you don't know this already, the only thing about > chronic > > renal insufficiency that can kill you immediately is very elevated > > potassium. > > > > My advice and the official advice of this group is that you should NOT > diet > > in any way without first consulting with your nephrologist. Everyone is > > different in how well their kidneys handle potassium, so there's no > blanket > > statement that applies to all. > > > > Pierre > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2004 Report Share Posted October 12, 2004 > > I have a brother who has chron's disease. His 3 yr old daughter has colitis and food allergies. My other nephew has a dairy allergy.His father has asthma. I heard that chrohn's is also and immunoglobulin problem. I have been told this is not uncommen to see various immune problems in 1 family-bad genes I guess. christine > a few more things have happened, two days, no flank pain, in fact, no > flank anything, I don't have that constant nagging feeling deep > inside that has accompanied me for years now. I've also noticed my > psoriasis is subsiding, I've got it pretty bad in my scalp, I think > that is due to no alcohol, as I've experienced that before. > Haematuria took a dive the other day, I was so surprised I called my > wife in to show her no bubbles! I think I overstepped the taste > threshold but she is a nurse Bubbles are back now so maybe that > was a false dawn. > > I've been web crawling again, and found the following on leaky guts, > a charming topic, however one thing leapt off the page at me, fish > oil decreases gut permeability, now when I was prescribed fish oil I > was given some mumbo jumbo about it soothing kidneys, but he didn't > know how it worked. It may be emulating the effect of the steroid > treatment, this explains why in some it works, in others, nothing, as > I do not believe we all have exactly the same cause, just the same > symptom. Another pointer I have personally is family history of food > intolerance. > > http://www.mdheal.org/leakygut.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2004 Report Share Posted October 12, 2004 Hi , Good for you for eating better! When I started on the pred, and realized all those side-effects, it really made me re-examine my diet and how I ate. Didn't look good: - lots of junk food - lots of processed foods ie. lots of sodium - lots of eating out ie. lots of sodium and fats too As a result, Kris and I started to change our diets. We ate out a lot less, avoided processed foods if possible, snacked on fruit, ate more salads and veggies, and ate meats and carbs in moderate portions (b/c I found I loved lots and lots of carbs). Also lots of physical activity, ie. dancing, golfing, walking. We found it worked for us. Sophia > > I'm a week into eating no rubbish... > > this was spurred on by several things, just feeling pretty unwell > being the main driver, plus a comment from my nephrologist that the > IGA we have problems with comes from the gut. I just happened to > have come across the patent for treatment using steroids in the gut > at the same time. > > no junk food, nothing out of a packet, no meat, no eggs, no dairy, > no wheat,no caffeine, no well you get the idea lots of water, > herbal tea (getting used to rooibosch) and veggies. > > first week was horrible, headaches, long drawn out grotty headaches, > presumably from caffeine withdrawl, I wasn't a heavy coffee drinker > but three or four cups a day. I generally felt yuk most of the > working week though. What a change this weekend, my energy levels > are up, blood pressure is down, every time I stand up, I get dizzy, > badly so earlier today. My eyes have cleared, and my wife informs > me my face has lost all puffiness and I smell less, you know man > smell, not BO PLUS the muggy head I have has gone, that's been > giving me real problems in work as I design software and stuff, I've > had a few meetings were I know I've been well below par. > > I'm seeing my nephro on weds, and will be very interested in my > serum creatinine etc and will of course be discussing the steroid > treatment. > > I could kill a nice steak, chips and a bottle of red wine though Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2004 Report Share Posted October 12, 2004 Oh yes, and my lab results: proteinuria went down 90% creatinine levels have dropped over time (altho spiked up recently due to a cold) hardly any blood in the urine all other lab values (albumin, etc.) were all normal. Of course, a lot of it had to do with the prednisone, but I think eating healthier is a good thing and helps too. Sophia > > > > I'm a week into eating no rubbish... > > > > this was spurred on by several things, just feeling pretty unwell > > being the main driver, plus a comment from my nephrologist that > the > > IGA we have problems with comes from the gut. I just happened to > > have come across the patent for treatment using steroids in the > gut > > at the same time. > > > > no junk food, nothing out of a packet, no meat, no eggs, no dairy, > > no wheat,no caffeine, no well you get the idea lots of water, > > herbal tea (getting used to rooibosch) and veggies. > > > > first week was horrible, headaches, long drawn out grotty > headaches, > > presumably from caffeine withdrawl, I wasn't a heavy coffee > drinker > > but three or four cups a day. I generally felt yuk most of the > > working week though. What a change this weekend, my energy levels > > are up, blood pressure is down, every time I stand up, I get > dizzy, > > badly so earlier today. My eyes have cleared, and my wife informs > > me my face has lost all puffiness and I smell less, you know man > > smell, not BO PLUS the muggy head I have has gone, that's been > > giving me real problems in work as I design software and stuff, > I've > > had a few meetings were I know I've been well below par. > > > > I'm seeing my nephro on weds, and will be very interested in my > > serum creatinine etc and will of course be discussing the steroid > > treatment. > > > > I could kill a nice steak, chips and a bottle of red wine though Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2004 Report Share Posted October 12, 2004 What a drop in proteinuria! Sophia, can you please refresh my memory exactly what the creatinine level drop was? I've been trying to keep a mental log of everyone whose creatinine has improved, but my memory is slipping these days. Thanks! Cy Re: no rubbish diet > > > Oh yes, and my lab results: > > proteinuria went down 90% > creatinine levels have dropped over time (altho spiked up recently > due to a cold) > hardly any blood in the urine > all other lab values (albumin, etc.) were all normal. > > Of course, a lot of it had to do with the prednisone, but I think > eating healthier is a good thing and helps too. > > Sophia > > > > > > > > I'm a week into eating no rubbish... > > > > > > this was spurred on by several things, just feeling pretty > unwell > > > being the main driver, plus a comment from my nephrologist that > > the > > > IGA we have problems with comes from the gut. I just happened > to > > > have come across the patent for treatment using steroids in the > > gut > > > at the same time. > > > > > > no junk food, nothing out of a packet, no meat, no eggs, no > dairy, > > > no wheat,no caffeine, no well you get the idea lots of > water, > > > herbal tea (getting used to rooibosch) and veggies. > > > > > > first week was horrible, headaches, long drawn out grotty > > headaches, > > > presumably from caffeine withdrawl, I wasn't a heavy coffee > > drinker > > > but three or four cups a day. I generally felt yuk most of the > > > working week though. What a change this weekend, my energy > levels > > > are up, blood pressure is down, every time I stand up, I get > > dizzy, > > > badly so earlier today. My eyes have cleared, and my wife > informs > > > me my face has lost all puffiness and I smell less, you know man > > > smell, not BO PLUS the muggy head I have has gone, that's > been > > > giving me real problems in work as I design software and stuff, > > I've > > > had a few meetings were I know I've been well below par. > > > > > > I'm seeing my nephro on weds, and will be very interested in my > > > serum creatinine etc and will of course be discussing the > steroid > > > treatment. > > > > > > I could kill a nice steak, chips and a bottle of red wine > though > > > > > > > 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 13, 2004 Report Share Posted October 13, 2004 WOW! if only, fingers crossed, everything crossed. I'm seeing the nephro this afternoon... I'm on someone elses PC though as mine has become like the monty python parrot, it is no more so my postings are limited. > > > > > > I'm a week into eating no rubbish... > > > > > > this was spurred on by several things, just feeling pretty > unwell > > > being the main driver, plus a comment from my nephrologist that > > the > > > IGA we have problems with comes from the gut. I just happened > to > > > have come across the patent for treatment using steroids in the > > gut > > > at the same time. > > > > > > no junk food, nothing out of a packet, no meat, no eggs, no > dairy, > > > no wheat,no caffeine, no well you get the idea lots of > water, > > > herbal tea (getting used to rooibosch) and veggies. > > > > > > first week was horrible, headaches, long drawn out grotty > > headaches, > > > presumably from caffeine withdrawl, I wasn't a heavy coffee > > drinker > > > but three or four cups a day. I generally felt yuk most of the > > > working week though. What a change this weekend, my energy > levels > > > are up, blood pressure is down, every time I stand up, I get > > dizzy, > > > badly so earlier today. My eyes have cleared, and my wife > informs > > > me my face has lost all puffiness and I smell less, you know man > > > smell, not BO PLUS the muggy head I have has gone, that's > been > > > giving me real problems in work as I design software and stuff, > > I've > > > had a few meetings were I know I've been well below par. > > > > > > I'm seeing my nephro on weds, and will be very interested in my > > > serum creatinine etc and will of course be discussing the > steroid > > > treatment. > > > > > > I could kill a nice steak, chips and a bottle of red wine > though Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 little update, I had a slab of tuna sunday, fine, no effect. Goat's cheese, no effect, good I love goat's cheese I had a dish yesterday with normal cream in it, BANG back came the flank pain, it subsided a few hours later and is gone again...may be related but will try again. It's really nice not to have a head full of cotton wool like I've had for nigh on two years. > > > a few more things have happened, two days, no flank pain, in fact, no Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 Good luck ! Let us know what the Neph says. In a message dated 10/13/2004 5:49:07 AM Pacific Daylight Time, jeffrey.farr@... writes: > WOW! > > if only, fingers crossed, everything crossed. > > I'm seeing the nephro this afternoon... > > I'm on someone elses PC though as mine has become like the monty > python parrot, it is no more so my postings are limited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 ....nahhh, he's just sleeping mate... :-) - the parrot that is Good luck at your neph appointment. Pierre Re: no rubbish diet > > > WOW! > > if only, fingers crossed, everything crossed. > > I'm seeing the nephro this afternoon... > > I'm on someone elses PC though as mine has become like the monty > python parrot, it is no more so my postings are limited. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 Hi Cy, The serum creatinine trend was an overall lowering, but the numbers themselves are kinda messed up because I was at 293 when I started, but then halfway through the treatment I was put back on Diovan ACE inhibitors because the Tiazac bp meds were causing my pulse to drop too low. As a result of taking the Diovan, the creatinine level jumped a bit to over 300. It did over time go down - at one point it dropped to 251. Not much, but the overall lowering trend was encouraging. Right now, it's at 302 (had just got over a cold). But the proteinuria drop was very very encouraging for preserving my kidney function. Sophia > > > > > > > > I'm a week into eating no rubbish... > > > > > > > > this was spurred on by several things, just feeling pretty > > unwell > > > > being the main driver, plus a comment from my nephrologist that > > > the > > > > IGA we have problems with comes from the gut. I just happened > > to > > > > have come across the patent for treatment using steroids in the > > > gut > > > > at the same time. > > > > > > > > no junk food, nothing out of a packet, no meat, no eggs, no > > dairy, > > > > no wheat,no caffeine, no well you get the idea lots of > > water, > > > > herbal tea (getting used to rooibosch) and veggies. > > > > > > > > first week was horrible, headaches, long drawn out grotty > > > headaches, > > > > presumably from caffeine withdrawl, I wasn't a heavy coffee > > > drinker > > > > but three or four cups a day. I generally felt yuk most of the > > > > working week though. What a change this weekend, my energy > > levels > > > > are up, blood pressure is down, every time I stand up, I get > > > dizzy, > > > > badly so earlier today. My eyes have cleared, and my wife > > informs > > > > me my face has lost all puffiness and I smell less, you know man > > > > smell, not BO PLUS the muggy head I have has gone, that's > > been > > > > giving me real problems in work as I design software and stuff, > > > I've > > > > had a few meetings were I know I've been well below par. > > > > > > > > I'm seeing my nephro on weds, and will be very interested in my > > > > serum creatinine etc and will of course be discussing the > > steroid > > > > treatment. > > > > > > > > I could kill a nice steak, chips and a bottle of red wine > > though > > > > > > > > > > > > > > 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 13, 2004 Report Share Posted October 13, 2004 It's always nice when our serum creatinine goes down, but, I wouldn't make too much of variations like that. They really don't mean a thing, especially if there have been changes in BP meds. I always hesitate to mention these kinds of things, because I don't want to take away things that give people some hope or some positive feelings. On the other hand, one can't totally disregard the reality of it. I remember the few months before I started dialysis, over the Spring and Summer of 2002. Back in January of that year, my serum creatinine went up over 400 umol/L for the first time. My neph made me choose a method of dialysis, and I had my fistula surgery that following April. In June, I almost thought it was miraculous that my latest serum creatinine was down to 302. I though great, maybe I have a few more years. Well, it went up over 400 and back to just over 300 a couple of times that summer, but by October it was up over 500, and I was started on dialysis. On the day I started, 4 days after my neph decided it was time to start, it was already up over 600 (I'm not a big man, so 500-600 was always the range of creatinine my nephrologist said I would start dialysis at - forgive the dangling participle). During most of the 25 or so years I had IgAN, in those days, they only checked you once a year, and sometimes not even that. In that scenario, with a slowly-progressing kidney disease, the interval between one lab result and the next is so long that the latest serum creatinine is bound to be a little higher than the previous one. But in today's scenario, where blood work is done relatively frequently (especially for those you have high proteinuria or other problems), the interval is so short that there are bound to be some results that are better than the previous ones, simply because serum creatinine is not an absolutely stable number that plots on a straight line. It varies on either side of the line, and it varies more when there are changes to blood pressure meds. It can also vary a bit if your muscle mass goes up or down (as when a person eats little or no protein), plus eating, exercising and hydration affect it to some extent - and that's not counting the 10% margin of error. What's significant about serum creatinine is the overall trend over time. Pierre Re: no rubbish diet > > > Hi Cy, > > The serum creatinine trend was an overall lowering, but the numbers > themselves are kinda messed up because I was at 293 when I started, > but then halfway through the treatment I was put back on Diovan ACE > inhibitors because the Tiazac bp meds were causing my pulse to drop > too low. > > As a result of taking the Diovan, the creatinine level jumped a bit > to over 300. It did over time go down - at one point it dropped to > 251. Not much, but the overall lowering trend was encouraging. > Right now, it's at 302 (had just got over a cold). > > But the proteinuria drop was very very encouraging for preserving my > kidney function. > > Sophia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 Jeff I think it's great that you are able to test the waters with this. I hope you are able to find something that works for you and doesn't cause build up of toxins. My renal dietician has me eating 7 servings of fruit a day to keep my potassium down and my calories up on my low protein diet. I find if I stick to my diet plan I feel much better for it...when I cheat I pay for it one way or another...but sometimes I do the " life's too short " sort of thing and eat what I want. (sort of like this weekend when I was on vacation with my sister and brother I had a ruben and loved every darn bite of it) Amy G. no rubbish diet > > > I'm a week into eating no rubbish... > > this was spurred on by several things, just feeling pretty unwell > being the main driver, plus a comment from my nephrologist that the > IGA we have problems with comes from the gut. I just happened to > have come across the patent for treatment using steroids in the gut > at the same time. > > no junk food, nothing out of a packet, no meat, no eggs, no dairy, > no wheat,no caffeine, no well you get the idea lots of water, > herbal tea (getting used to rooibosch) and veggies. > > first week was horrible, headaches, long drawn out grotty headaches, > presumably from caffeine withdrawl, I wasn't a heavy coffee drinker > but three or four cups a day. I generally felt yuk most of the > working week though. What a change this weekend, my energy levels > are up, blood pressure is down, every time I stand up, I get dizzy, > badly so earlier today. My eyes have cleared, and my wife informs > me my face has lost all puffiness and I smell less, you know man > smell, not BO PLUS the muggy head I have has gone, that's been > giving me real problems in work as I design software and stuff, I've > had a few meetings were I know I've been well below par. > > I'm seeing my nephro on weds, and will be very interested in my > serum creatinine etc and will of course be discussing the steroid > treatment. > > I could kill a nice steak, chips and a bottle of red wine though > > > > > > > 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 13, 2004 Report Share Posted October 13, 2004 Thanks Pierre, I realize that the trend in the serum creatinine levels is the most important, not the numbers themselves. But it's so hard not to focus on the numbers sometimes, since they add to the trend...and the prednisone could affect this value as well as other lab values. My neph told me that over the course of the treatment, my kidneys have stabilized but no significant improvement in kidney function, which we thought was happening at the beginning. Of course, I'm disappointed to hear that, but all in all, the prednisone really did work for me, and I hope that the treatment will stop the deterioration of my kidneys. Preferably forever. Sophia > It's always nice when our serum creatinine goes down, but, I wouldn't make > too much of variations like that. They really don't mean a thing, especially > if there have been changes in BP meds. I always hesitate to mention these > kinds of things, because I don't want to take away things that give people > some hope or some positive feelings. On the other hand, one can't totally > disregard the reality of it. > > I remember the few months before I started dialysis, over the Spring and > Summer of 2002. Back in January of that year, my serum creatinine went up > over 400 umol/L for the first time. My neph made me choose a method of > dialysis, and I had my fistula surgery that following April. In June, I > almost thought it was miraculous that my latest serum creatinine was down to > 302. I though great, maybe I have a few more years. Well, it went up over > 400 and back to just over 300 a couple of times that summer, but by October > it was up over 500, and I was started on dialysis. On the day I started, 4 > days after my neph decided it was time to start, it was already up over 600 > (I'm not a big man, so 500-600 was always the range of creatinine my > nephrologist said I would start dialysis at - forgive the dangling > participle). > > During most of the 25 or so years I had IgAN, in those days, they only > checked you once a year, and sometimes not even that. In that scenario, with > a slowly-progressing kidney disease, the interval between one lab result and > the next is so long that the latest serum creatinine is bound to be a little > higher than the previous one. But in today's scenario, where blood work is > done relatively frequently (especially for those you have high proteinuria > or other problems), the interval is so short that there are bound to be some > results that are better than the previous ones, simply because serum > creatinine is not an absolutely stable number that plots on a straight line. > It varies on either side of the line, and it varies more when there are > changes to blood pressure meds. It can also vary a bit if your muscle mass > goes up or down (as when a person eats little or no protein), plus eating, > exercising and hydration affect it to some extent - and that's not counting > the 10% margin of error. What's significant about serum creatinine is the > overall trend over time. > Pierre > > Re: no rubbish diet > > > > > > > > Hi Cy, > > > > The serum creatinine trend was an overall lowering, but the numbers > > themselves are kinda messed up because I was at 293 when I started, > > but then halfway through the treatment I was put back on Diovan ACE > > inhibitors because the Tiazac bp meds were causing my pulse to drop > > too low. > > > > As a result of taking the Diovan, the creatinine level jumped a bit > > to over 300. It did over time go down - at one point it dropped to > > 251. Not much, but the overall lowering trend was encouraging. > > Right now, it's at 302 (had just got over a cold). > > > > But the proteinuria drop was very very encouraging for preserving my > > kidney function. > > > > Sophia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 > I agree Pierre, when I was diagnosed my creatine was 4.5 then went as high as 5.3 in the hospital. over the last 3 yrs I would get it checked every 1-2 months on average. sometimes it was 4.9 and then 4.1 then 4.7 etc. It seems to remain between 4 and 5 until a recent lab draw of 6.3. to me- that was a concern but following lab was 5.4. I am getting it checked again next monday. When it was between 4 and 5 all the time I considered that as being basically the same kidney function. It does bounce around some. christine It's always nice when our serum creatinine goes down, but, I wouldn't make > too much of variations like that. They really don't mean a thing, especially > if there have been changes in BP meds. I always hesitate to mention these > kinds of things, because I don't want to take away things that give people > some hope or some positive feelings. On the other hand, one can't totally > disregard the reality of it. > > I remember the few months before I started dialysis, over the Spring and > Summer of 2002. Back in January of that year, my serum creatinine went up > over 400 umol/L for the first time. My neph made me choose a method of > dialysis, and I had my fistula surgery that following April. In June, I > almost thought it was miraculous that my latest serum creatinine was down to > 302. I though great, maybe I have a few more years. Well, it went up over > 400 and back to just over 300 a couple of times that summer, but by October > it was up over 500, and I was started on dialysis. On the day I started, 4 > days after my neph decided it was time to start, it was already up over 600 > (I'm not a big man, so 500-600 was always the range of creatinine my > nephrologist said I would start dialysis at - forgive the dangling > participle). > > During most of the 25 or so years I had IgAN, in those days, they only > checked you once a year, and sometimes not even that. In that scenario, with > a slowly-progressing kidney disease, the interval between one lab result and > the next is so long that the latest serum creatinine is bound to be a little > higher than the previous one. But in today's scenario, where blood work is > done relatively frequently (especially for those you have high proteinuria > or other problems), the interval is so short that there are bound to be some > results that are better than the previous ones, simply because serum > creatinine is not an absolutely stable number that plots on a straight line. > It varies on either side of the line, and it varies more when there are > changes to blood pressure meds. It can also vary a bit if your muscle mass > goes up or down (as when a person eats little or no protein), plus eating, > exercising and hydration affect it to some extent - and that's not counting > the 10% margin of error. What's significant about serum creatinine is the > overall trend over time. > Pierre > > Re: no rubbish diet > > > > > > > > Hi Cy, > > > > The serum creatinine trend was an overall lowering, but the numbers > > themselves are kinda messed up because I was at 293 when I started, > > but then halfway through the treatment I was put back on Diovan ACE > > inhibitors because the Tiazac bp meds were causing my pulse to drop > > too low. > > > > As a result of taking the Diovan, the creatinine level jumped a bit > > to over 300. It did over time go down - at one point it dropped to > > 251. Not much, but the overall lowering trend was encouraging. > > Right now, it's at 302 (had just got over a cold). > > > > But the proteinuria drop was very very encouraging for preserving my > > kidney function. > > > > Sophia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 Hope this afternoon went well ! Let us know what your neph says! Cy Re: no rubbish diet > > > WOW! > > if only, fingers crossed, everything crossed. > > I'm seeing the nephro this afternoon... > > I'm on someone elses PC though as mine has become like the monty > python parrot, it is no more so my postings are limited. > > > > > > > > > > > I'm a week into eating no rubbish... > > > > > > > > this was spurred on by several things, just feeling pretty > > unwell > > > > being the main driver, plus a comment from my nephrologist that > > > the > > > > IGA we have problems with comes from the gut. I just happened > > to > > > > have come across the patent for treatment using steroids in the > > > gut > > > > at the same time. > > > > > > > > no junk food, nothing out of a packet, no meat, no eggs, no > > dairy, > > > > no wheat,no caffeine, no well you get the idea lots of > > water, > > > > herbal tea (getting used to rooibosch) and veggies. > > > > > > > > first week was horrible, headaches, long drawn out grotty > > > headaches, > > > > presumably from caffeine withdrawl, I wasn't a heavy coffee > > > drinker > > > > but three or four cups a day. I generally felt yuk most of the > > > > working week though. What a change this weekend, my energy > > levels > > > > are up, blood pressure is down, every time I stand up, I get > > > dizzy, > > > > badly so earlier today. My eyes have cleared, and my wife > > informs > > > > me my face has lost all puffiness and I smell less, you know > man > > > > smell, not BO PLUS the muggy head I have has gone, that's > > been > > > > giving me real problems in work as I design software and stuff, > > > I've > > > > had a few meetings were I know I've been well below par. > > > > > > > > I'm seeing my nephro on weds, and will be very interested in my > > > > serum creatinine etc and will of course be discussing the > > steroid > > > > treatment. > > > > > > > > I could kill a nice steak, chips and a bottle of red wine > > though > > > > > > > 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 13, 2004 Report Share Posted October 13, 2004 Thanks Sophia! It's scary trying to sort out drug related creatinine increases from other ones. When was on cyclosporine, his creatinine went up. With kids, the increase is unnerving because the numbers are lower, you can have a 200% increase (in A's case, he went from 0.4 to 1.2). Fortunately, it too subsided when he got off cyclo. I'm impressed that you started at 293 and dropped to 251. Here's hoping you get back there fast! Cy Re: no rubbish diet > > > Hi Cy, > > The serum creatinine trend was an overall lowering, but the numbers > themselves are kinda messed up because I was at 293 when I started, > but then halfway through the treatment I was put back on Diovan ACE > inhibitors because the Tiazac bp meds were causing my pulse to drop > too low. > > As a result of taking the Diovan, the creatinine level jumped a bit > to over 300. It did over time go down - at one point it dropped to > 251. Not much, but the overall lowering trend was encouraging. > Right now, it's at 302 (had just got over a cold). > > But the proteinuria drop was very very encouraging for preserving my > kidney function. > > Sophia > > > > > > > > > > > > I'm a week into eating no rubbish... > > > > > > > > > > this was spurred on by several things, just feeling pretty > > > unwell > > > > > being the main driver, plus a comment from my nephrologist > that > > > > the > > > > > IGA we have problems with comes from the gut. I just > happened > > > to > > > > > have come across the patent for treatment using steroids in > the > > > > gut > > > > > at the same time. > > > > > > > > > > no junk food, nothing out of a packet, no meat, no eggs, no > > > dairy, > > > > > no wheat,no caffeine, no well you get the idea lots of > > > water, > > > > > herbal tea (getting used to rooibosch) and veggies. > > > > > > > > > > first week was horrible, headaches, long drawn out grotty > > > > headaches, > > > > > presumably from caffeine withdrawl, I wasn't a heavy coffee > > > > drinker > > > > > but three or four cups a day. I generally felt yuk most of > the > > > > > working week though. What a change this weekend, my energy > > > levels > > > > > are up, blood pressure is down, every time I stand up, I get > > > > dizzy, > > > > > badly so earlier today. My eyes have cleared, and my wife > > > informs > > > > > me my face has lost all puffiness and I smell less, you know > man > > > > > smell, not BO PLUS the muggy head I have has gone, that's > > > been > > > > > giving me real problems in work as I design software and > stuff, > > > > I've > > > > > had a few meetings were I know I've been well below par. > > > > > > > > > > I'm seeing my nephro on weds, and will be very interested in > my > > > > > serum creatinine etc and will of course be discussing the > > > steroid > > > > > treatment. > > > > > > > > > > I could kill a nice steak, chips and a bottle of red wine > > > though > > > > > > > > > > > > > > > > > > > > > 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 13, 2004 Report Share Posted October 13, 2004 Thanks Cy! I was wondering how to explain the numbers to you when medication changes kinda changed the numbers too! My neph told me in advance to expect the creatinine level to increase when I started taking the Diovan. Wow, 's creatinine increase must have been frightening since it increased so much (3x is a lot, even for a drug-related increase)! I'm glad that it went down after he stopped the medication. How is he doing these days? Sophia > > > > > > > > > > > > I'm a week into eating no rubbish... > > > > > > > > > > > > this was spurred on by several things, just feeling pretty > > > > unwell > > > > > > being the main driver, plus a comment from my nephrologist > > that > > > > > the > > > > > > IGA we have problems with comes from the gut. I just > > happened > > > > to > > > > > > have come across the patent for treatment using steroids in > > the > > > > > gut > > > > > > at the same time. > > > > > > > > > > > > no junk food, nothing out of a packet, no meat, no eggs, no > > > > dairy, > > > > > > no wheat,no caffeine, no well you get the idea lots of > > > > water, > > > > > > herbal tea (getting used to rooibosch) and veggies. > > > > > > > > > > > > first week was horrible, headaches, long drawn out grotty > > > > > headaches, > > > > > > presumably from caffeine withdrawl, I wasn't a heavy coffee > > > > > drinker > > > > > > but three or four cups a day. I generally felt yuk most of > > the > > > > > > working week though. What a change this weekend, my energy > > > > levels > > > > > > are up, blood pressure is down, every time I stand up, I get > > > > > dizzy, > > > > > > badly so earlier today. My eyes have cleared, and my wife > > > > informs > > > > > > me my face has lost all puffiness and I smell less, you know > > man > > > > > > smell, not BO PLUS the muggy head I have has gone, that's > > > > been > > > > > > giving me real problems in work as I design software and > > stuff, > > > > > I've > > > > > > had a few meetings were I know I've been well below par. > > > > > > > > > > > > I'm seeing my nephro on weds, and will be very interested in > > my > > > > > > serum creatinine etc and will of course be discussing the > > > > steroid > > > > > > treatment. > > > > > > > > > > > > I could kill a nice steak, chips and a bottle of red wine > > > > though > > > > > > > > > > > > > > > > > > > > > > > > > > > > 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 14, 2004 Report Share Posted October 14, 2004 put a posting named lab rat. as of tomorrow I start on the drug in the patent. Pricey, 100 UKP per 100, however as I pointed out to te pharmacist, cheaper than dialysis. I'll post to let people know how I'm faring. > > > > > > > > > > I'm a week into eating no rubbish... > > > > > > > > > > this was spurred on by several things, just feeling pretty > > > unwell > > > > > being the main driver, plus a comment from my nephrologist that > > > > the > > > > > IGA we have problems with comes from the gut. I just happened > > > to > > > > > have come across the patent for treatment using steroids in the > > > > gut > > > > > at the same time. > > > > > > > > > > no junk food, nothing out of a packet, no meat, no eggs, no > > > dairy, > > > > > no wheat,no caffeine, no well you get the idea lots of > > > water, > > > > > herbal tea (getting used to rooibosch) and veggies. > > > > > > > > > > first week was horrible, headaches, long drawn out grotty > > > > headaches, > > > > > presumably from caffeine withdrawl, I wasn't a heavy coffee > > > > drinker > > > > > but three or four cups a day. I generally felt yuk most of the > > > > > working week though. What a change this weekend, my energy > > > levels > > > > > are up, blood pressure is down, every time I stand up, I get > > > > dizzy, > > > > > badly so earlier today. My eyes have cleared, and my wife > > > informs > > > > > me my face has lost all puffiness and I smell less, you know > > man > > > > > smell, not BO PLUS the muggy head I have has gone, that's > > > been > > > > > giving me real problems in work as I design software and stuff, > > > > I've > > > > > had a few meetings were I know I've been well below par. > > > > > > > > > > I'm seeing my nephro on weds, and will be very interested in my > > > > > serum creatinine etc and will of course be discussing the > > > steroid > > > > > treatment. > > > > > > > > > > I could kill a nice steak, chips and a bottle of red wine > > > though > > > > > > > > > > > > > > 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 14, 2004 Report Share Posted October 14, 2004 Best wishes to you on the study Jeffery. I have a real appreciation for you and Bonnie and others who willingly test out new drugs or new protocols to see if they will help all of us. I hope you get great results. In a message dated 10/14/2004 5:36:15 AM Pacific Daylight Time, jeffrey.farr@... writes: > > put a posting named lab rat. > > as of tomorrow I start on the drug in the patent. Pricey, 100 UKP > per 100, however as I pointed out to te pharmacist, cheaper than > dialysis. I'll post to let people know how I'm faring. Quote Link to comment Share on other sites More sharing options...
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