I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on January 27, 2010, 02:05:15 AM
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Leaving aside the fact that a kidney biopsy may help in medical research,
has anyone had any experience of a biopsy being taken which led to
an understanding of the kidney problem/disease which led to a treatment
which was successful to stop the kidney deterioration?
I ask this question because through my life since I had my first kidney failure in 1971
some medics have wanted to have another biopsy, yet other medics have said
that is totally unnecessary, because it is known from my first kidney biopsy taken at that time,
that I suffer from chronic proliferative glomerulonephritis & there is no cure for that,
& the only thing I can do is have blood-tests (Creatinine/Urea/Potassium/Sodium),
to monitor the progress of my kidney deterioration.
Is there any condition of the kidney where a biopsy is important because
from the biopsy a treatment can be devised to cure the problem?
In short, is a biopsy necessary if there is no positive outcome
apart from the medical research?
Having a biopsy has always been an important question for me
because I have read it could cause me some type of Lupus/SLE/MCTD-flare-up
which may further damage my kidneys, so I have always been in a quandary
about this when a medic wanted to take a biopsy & I did not comprehend why,
especially since my further diagnosis of Lupus/SLE/MCTD in 1995 & 2003.
Furthermore a few years ago I read in a paper there is no point
in taking a kidney biopsy because it is such a tiny amount of tissue and
the kidney is in comparison so large that it may be a complete waste of time
because the tissue taken might not be from a diseased part of the kidney.
So the tremendous risk outweighs the benefit as far as I am concerned.
But it still leaves me wondering what biopsies are for.
Thanks, Kristina.
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I never did have a kidney biopsey because they already knew what the cause of the kidney failure was. So, yes I'd agree with them - a biopsey could make my other health issues flare up - and wouldn't teach them anything.
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I don't know much about biopsies but my Blokey (husband) had one done last year. It resulted in him being told there were four things wrong with his kidneys, all of which were allegedly treatable. He was on dialysis within weeks (or it might have been days, everything that happened last year is a bit of a blur) of this though, so I'm a tad annoyed that having the biopsy gave him false hope and led him to believe that his kidney disease was nothing to really worry about in the short-term.
He had one because they didn't really know what was wrong with his kidneys and needed to find out. If you already know the cause of kidney failure I assume you wouldn't need to have a biopsy.
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I had 1 July 1994, at that time they did know what was wrong with my kidneys or what treatment to start...... IgA nephropathy was found, and no treatment was found. But I knew what I was dealing with.
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Thank you very much for your honest replies and thanks Hanify for pointing out what I was hoping.
I was wondering for a long time whether or not I did the right thing, when I refused to have another biopsy taken & I only had my instinct to go on.
I also remembered complications at my first renal biopsy because it made my kidneys bleed & I was then told not to risk any other biopsy.
I am very sorry for Blokey and chiefsfan, it must have been a terrible blow to have all hopes for a treatment smashed.
Thanks again for your answers & kind regards from Kristina.
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I had a biopsy in 2001 when my kidneys first failed.
They took a few samples on both kidneys and the lab results diagnosed my illness (Goodpasture's Disease) which then allowed them to decide on a course of treatment(cytoxin and prednisone). It probably saved my life. I can understand doing a biopsy initially to determine cause, but once diagnosed, I don't see a reason for another. Unless those doctors think something else might be going on. Right now, with your kidney function so low, I wouldn't want to risk it and I can understand your reticence.
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I had one done back in May which showed I had entersticial nerfritis which the cause was a reaction to a drug which my neph and I disagree with because I never took any over the counter medications because I was completely healthy. Heck I never took meds for headaches partly do to I could never swallow pills until now.
Troy
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My ankles swelled up in 1989. I was referred to a neph. He suggested a biopsy to find out what was wrong with my kidneys. They got a piece of diseased tissue and found that I had MGN (membranous glomerulonephritis). I was given a treatment of alternating prednisone and chlorumbicil every other month for six months and three infusions drips of 500 ml or so of intravenous prednisone. The goal being to either stop or slow the progression of the disease.
Fast forward 20+ years to today and I am at stage IV, GFR 18. MGN is a slow progressing kidney disease with a third of the people that get in going into remission WITHOUT any treatment. A third live with the condition and never reach ESRF. A third do progress to ESRF. It appears I will progress to ESRF. Almost there now.
Now as to whether this was due to the treatment or to the natural progression of the disease.
WHO KNOWS??????
http://www.springerlink.com/content/j204217w48j65202/
Received: 28 October 1993 Accepted: 20 December 1993
Abstract Because of the high rate of spontaneous remission, treatment of membranous nephropathy with prednisolone and chlorambucil is still controversial. The aim of this study was to give this therapy only to those patients at risk of developing renal insufficiency and to test the efficacy of a low-dose therapeutic regimen. Seventeen patients with more than 10 g protein excretion per day (mean 16.9) and/or a deterioration in renal function (mean serum creatinine, 162 mgrmol/l) were included. Serum total protein, serum lipids, proteinuria, serum creatinine, and blood pressure were measured, along with the diuretic and antihypertensive medication. The observation time before the start of treatment was 27 ± 27 months. Steroids were given during months 1, 3, and 5 (methylprednisolone 3 × 500 mg intravenously) prednisolone 0.5 mg/kgBW daily per os for 1 week, then tapered by 0.1 mg/kg BW/week for 1 month. Chlorambucil was given during months 2, 4, and 6 at a dose of 0.12 mg/kgBW daily. At the end of treatment proteinuria had significantly decreased (mean of all patients, 7.8 ± 1.4 g/d) in all patients. Six months after the end of treatment proteinuria was significantly lower than at baseline in 14 of 17 patients. Hypoproteinemia and hyperlipidemia had improved; diuretic and antihypertensive medication were reduced. Elevated serum creatinine decreased in 7 of 9 patients (pretreatment, 227 ± 39 mgrmol/1; 6 months, 176 ± 28 mgrmol/l). Nonresponders with respect to serum creatinine responded with respect to proteinuria. Regarding adverse effects, two patients complained of dyspepsia while taking steroids; during chlorambucil treatment two patients experienced nausea and lack of appetite, and one developed leukopenia (1600/mgrl). Chlorambucil was stopped and cell counts normalized 2 weeks later. We conclude that low-dose prednisolone/chlorambucil is both safe and efficient in the majority of patients with severe membranous nephropathy.
Key words Idiopathic membranous glomerulonephritis - Treatment
Abbreviations MGN membranous glomerulonephritis
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Many thanks for further comments with regard to the biopsy question.
So far, the picture does not look very clear, and it seems some very hard decisions have to be made with regard to weighing up the risks of having a biopsy. It appears that there is a question as to what the biopsy itself will do to the kidneys. I can’t see clarity here on how to make a decision and it looks as if it is up to each of us to weigh it up at the time when talking to a medic.
In my case my instinct was that they wanted another biopsy out of curiosity as to why my kidneys had kept going for so long after my first kidney failure. (Interestingly, they did not want to know anything about my diet and life-style...).
Of course I was told by medics there may be a question as to whether the diagnosis of the original biopsy was correct or not. But I know for sure that my biopsy was diagnosed by one of the leading experts at the time and I was very strongly advised not to ever have a biopsy again because of the high risk of a biopsy causing further damage, flare-up, etc.
I do wish to say I think it is extremely interesting to read the comments here because I spent so many years having no feed-back from other patients on the biopsy question and some medics made me feel so rotten for refusing to have another biopsy taken.
It is so good we can at last exchange our experiences.
Thanks again, Kristina.
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In my case I was due to have a kidney biopsy before I was diagnosed with multiple myeloma. As it happened on the day i was mean to have it there was a mix up with the booking of the operation room - they had a doctor bit no room. I waited all day and they were very apologetic bit they'd have to put it off till next week kind of thing. Then the renal doctor said - actually, before you go home, but give me a urine sample would you? And he was the one who picked up the myeloma. As it happens, the very worst thing you can do when you have myeloma is a kidney biopsy - so God was looking after me that day! As it happened the kidneys were kaput within a couple of months anyway. Never had the biopsy - yay - one less invasive procedure.
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Hello Hanify, it sounds as though luck was really on your side that day
and I suppose we should never forget that great luck
seems to play a significant role in our survival...
I wish you the very best of luck with all your treatment!