dolphins
09-16-2008, 10:12 PM
I've recently been diagnosed with this.
Earlier this year I had microalbuminuria, since then I've done one 12 hour collection and 1 24hr collection both showed proteinuria the recent 4g/day and slightly decreased kidney function.
I have type 1 diabetes and the kidney specialist wants to put me on a high dose of prednisolone. I DO NOT want to be put on it (I've taken small doses of pred for asthma and even small doses I run bg's in 20's). Are steroids the only option or are there other meds you can take? If not does MCD require treatment?
Earlier this year I had microalbuminuria, since then I've done one 12 hour collection and 1 24hr collection both showed proteinuria the recent 4g/day and slightly decreased kidney function.
I have type 1 diabetes and the kidney specialist wants to put me on a high dose of prednisolone. I DO NOT want to be put on it (I've taken small doses of pred for asthma and even small doses I run bg's in 20's). Are steroids the only option or are there other meds you can take? If not does MCD require treatment?
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idunno
10-04-2008, 03:35 AM
Hi Dolphins,
I was diagnosed with minimal change diseasae after a kidney biopsy. I am 58. My first 24hr protein /urine test was showing protein loss in the low 2 gramms. It has gradually risen to the 3 gramms. For the past two months I have been taking daily doses of 75 mg of prednisone. I'll tell you no lies ,it effects me dreadfully,mood swings, little sleep ,stomach pains (possibly ulcers) ,the need to take high doses of calcium to stop bone density loss. I never feel well... I asked about the options of no treatment. My nephrologist advised me that the protein basically stops the blood from leaking out of the veins and causing swelling . He said that the major complication of that was Blood clots then forming in the veins. In his opinnion no teatment was not an option. After two months on the high dose my 24 hr protein loss has dropped to 1.8 grams ,still a long way to go to the accepted .150 mg. The other options are the anti-rejection drugs like cyclosporin. They too have side effects,have a long treatment cycle and still need prednisone in conjunction with them.
The prednisone is having an adverse effect on my liver and my cholesterol has gone sky high. I am not diabetic but I have issues with high blood pressure and am Insulin resistent.
I am not happy taking the prednisone but at this point I see little other option. I will keep you informed on my progress,Cheers Ron.
I was diagnosed with minimal change diseasae after a kidney biopsy. I am 58. My first 24hr protein /urine test was showing protein loss in the low 2 gramms. It has gradually risen to the 3 gramms. For the past two months I have been taking daily doses of 75 mg of prednisone. I'll tell you no lies ,it effects me dreadfully,mood swings, little sleep ,stomach pains (possibly ulcers) ,the need to take high doses of calcium to stop bone density loss. I never feel well... I asked about the options of no treatment. My nephrologist advised me that the protein basically stops the blood from leaking out of the veins and causing swelling . He said that the major complication of that was Blood clots then forming in the veins. In his opinnion no teatment was not an option. After two months on the high dose my 24 hr protein loss has dropped to 1.8 grams ,still a long way to go to the accepted .150 mg. The other options are the anti-rejection drugs like cyclosporin. They too have side effects,have a long treatment cycle and still need prednisone in conjunction with them.
The prednisone is having an adverse effect on my liver and my cholesterol has gone sky high. I am not diabetic but I have issues with high blood pressure and am Insulin resistent.
I am not happy taking the prednisone but at this point I see little other option. I will keep you informed on my progress,Cheers Ron.
dolphins
10-21-2008, 07:41 PM
Hello Ron, thanks for your reply... and I notice your from Australia too.
I've been pretty bad about taking the pred, going on and off it... I've not really had any side effects, losing weight rather than gaining (seems everyone says they gain heaps on pred)...
My last 24 hr collection was 4.55 grams/day, I do another 24 hr collection Sun-Mon, go for blood tests on Mon and see my kidney dr on Thurs.
How has your kidney function been? I'm a young adult and even with MCD mine tends to go back and forth between good and VERY mild impairment.
I've also had it explained to me the biggest risk is clots but also my endo and kidney specialist seem to think if I ignore it the protein will damage my kidneys.
Problem I've never seen pred as a long term drug...... I'm certainly being more compliant the last couple of weeks though...
I've been pretty bad about taking the pred, going on and off it... I've not really had any side effects, losing weight rather than gaining (seems everyone says they gain heaps on pred)...
My last 24 hr collection was 4.55 grams/day, I do another 24 hr collection Sun-Mon, go for blood tests on Mon and see my kidney dr on Thurs.
How has your kidney function been? I'm a young adult and even with MCD mine tends to go back and forth between good and VERY mild impairment.
I've also had it explained to me the biggest risk is clots but also my endo and kidney specialist seem to think if I ignore it the protein will damage my kidneys.
Problem I've never seen pred as a long term drug...... I'm certainly being more compliant the last couple of weeks though...
idunno
10-23-2008, 04:54 AM
Hi dolphins,
Saw my nephrologist on monday. He is not happy with the effects the prednisone is having. He does not believe that it is effective . I have just done another 24 hr collection to confirm this. If this proves correct he will wean me off the pred allow my protein loss to get over 3 grams and at that stage he is allowed to prescribe cyclosporin which is in the anti - rejection group of drugs. I'm not so sure i want to go on that either as the duration of the treatment is longer and these drugs have heaps of side effects too... My kidney functions are remaining normal eccept for the protein loss. As a matter of fact my serum protein levels are almost in the normal range. He said that my condition was not nephrotic. I have no idea what he means. I may be changing docs soon this guy let me down badly. He did an ultrasound of renal and bladder that showed significant prostateism with an enlarged prostate gland denting into my bladder. The scope was done on 4/76/08 and he didn't feel it was neccessary to give me those results. Not happy. Ron.
Saw my nephrologist on monday. He is not happy with the effects the prednisone is having. He does not believe that it is effective . I have just done another 24 hr collection to confirm this. If this proves correct he will wean me off the pred allow my protein loss to get over 3 grams and at that stage he is allowed to prescribe cyclosporin which is in the anti - rejection group of drugs. I'm not so sure i want to go on that either as the duration of the treatment is longer and these drugs have heaps of side effects too... My kidney functions are remaining normal eccept for the protein loss. As a matter of fact my serum protein levels are almost in the normal range. He said that my condition was not nephrotic. I have no idea what he means. I may be changing docs soon this guy let me down badly. He did an ultrasound of renal and bladder that showed significant prostateism with an enlarged prostate gland denting into my bladder. The scope was done on 4/76/08 and he didn't feel it was neccessary to give me those results. Not happy. Ron.
dolphins
10-24-2008, 06:30 AM
Wow, I wouldn't be happy with that treatment either, I think as a patient you have every right to know results of tests that are done.
I'm sorry to heat pred isn't working for you. I wouldn't have a clue what my protein levels are like, except for albumin, that's still pretty good. I had a test, total protein which was borderline low and another for immunoglobulins which were all low.
My urea ranges from 7-8's and up to 11, have had one in the 6's and creat is ranging from 80's to high 90's, apparently not great (but not bad) for someone of my build. Except for about a month ago my creat got back to the 60's.
I'd recommend you to my dr but I don't know if we can do that here? or if you are from the same state I live...:(
I'm sorry to heat pred isn't working for you. I wouldn't have a clue what my protein levels are like, except for albumin, that's still pretty good. I had a test, total protein which was borderline low and another for immunoglobulins which were all low.
My urea ranges from 7-8's and up to 11, have had one in the 6's and creat is ranging from 80's to high 90's, apparently not great (but not bad) for someone of my build. Except for about a month ago my creat got back to the 60's.
I'd recommend you to my dr but I don't know if we can do that here? or if you are from the same state I live...:(
idunno
10-25-2008, 06:48 PM
Hi Dolphins,
I live in nambour on the Sunshine coast in Queensland. I have been having treatment at the Wesley Medical centre in Brisbane. I tried to get into a local neph on the coast but he was booked out way in advance. The guy I am with in brisbane has only just got his wings. He studied under a top doc but I am starting to get very nervous. I am a 11 yr survivor of st3 colon ca. You would think with history like that , he would have been a bit more forethcoming with the test results. I see a neurolagist tomorrow to see why I can't feel my feet. It now looks possible the enlarged prostate may be squeezing some nerves...Sooner I get weaned off pred the better. From what I can understand MCD is a disease of childhood and heavy doses of steroids usually cures the problem in kids.. Wish I was Younger..cheers Ron.
I live in nambour on the Sunshine coast in Queensland. I have been having treatment at the Wesley Medical centre in Brisbane. I tried to get into a local neph on the coast but he was booked out way in advance. The guy I am with in brisbane has only just got his wings. He studied under a top doc but I am starting to get very nervous. I am a 11 yr survivor of st3 colon ca. You would think with history like that , he would have been a bit more forethcoming with the test results. I see a neurolagist tomorrow to see why I can't feel my feet. It now looks possible the enlarged prostate may be squeezing some nerves...Sooner I get weaned off pred the better. From what I can understand MCD is a disease of childhood and heavy doses of steroids usually cures the problem in kids.. Wish I was Younger..cheers Ron.