Re: Prednisone treatment? Pierre

[Guest guest]

You are probably right about it taking a long, long time to determine

the best treatment for IgaN. Mine is a case in point: 43 years ago

I had acute glumerulitis with no subsequent treatment with steroids;

only antibiotics short term. In March 2004 I was diagnosed via

biopsy with IgaN and immediately prescribed prednisone. The side

effects were so bad that I think I would need to be held down to take

it again. I have been off pred since Oct 5 and my labs have remained

stable and I feel that life is worthwhile again. Was it worth

it?............Thanks for all your wonderful information. Gloria

> There is certainly more prednisone use now than just a few years

ago, I

> find.

>

> The most common thing about IgAN is that the most appropriate

treatment is

> not known.

>

> There have been some positive reports about various things,

including

> corticosteroids, but there is little in the way of convincing

evidence about

> anything, except that ACE inhibitors and ARBs seem to be slow

progression,

> as well as reducing proteinuria somewhat. This is what makes it so

hard to

> answer questions like this one. At least with ACEI and ARB's, many

people

> have to take something for blood pressure anyway.

>

> I think we're at a point now that, if both the patient and the

nephrologist

> don't mind the side effects, many people can end up being prescribed

> prednisone, and be perpetually either on it or weaning off from it.

When I

> think about quality of life, it's hard to say that those on

prednisone are

> better off overall, except in cases of nephrotic syndrome. On the

other

> hand, the worst quality of life of all is if someone reaches esrd,

so,

> there's a tendency to give every possible " treatment " a try to see

what it

> will do.

>

> One thing I'm concerned about with drugs like prednisone is the

tendency

> some nephrologists have of looking only at the kidneys, and not the

rest of

> the body. They might make the renal numbers look better for a

while, but

> they might not care as much about long term side effects in the

patient

> (which can be quite severe and debilitating). All studies are

relatively

> short, and they look at very specific end-points. The ultimate test

is

> whether prednisone would reduce the rate at which IgAN patients

reach esrd.

> Approximately 1 to 2% of IgAN patients reach esrd each year, and

those that

> do have usually done so only after 10, 20 years or more. So, at

that rate,

> it's going to take a heck of a long study to see what really

reduces esrd.

>

> Pierre

>

> Re: Prednisone treatment?

> >

> >

> > >

> > > The primary use for prednisone is for reducing heavy

proteinuria to more

> > > manageable levels. In recent years, some (not all)

nephrologists have

> > > started using it in cases where proteinuria is more moderate.

In some

> > cases,

> > > it might be used in mild IgAN in hopes of putting it into some

kind of

> > > remission. But the catch is, even if it helps while taking it,

IgAN is

> > > usually not severe enough of a disease to keep a person on

prednisone

> > > indefinitely. The long term adverse effects of this drug are

just too

> > > great - maybe worse than the disease being treated. So, you take

> > prednisone

> > > for a while, then you have to be weaned off, and then you're

back where

> > you

> > > started.

> > >

> > > The " standard " treatment for IgAN is still primarily the same

as you

> had,

> > > ie. appropriate BP meds. Fish oil use is still not universally

accepted,

> > > simply because the evidence is disputable - both actual trial

evidence

> and

> > > observable evidence from actual clinical practice.

> > >

> > > The problem with IgAN is that, while it can and does cause

proteinuria,

> > IgAN

> > > can progress to esrd even if proteinuria is always relatively

mild (as

> it

> > is

> > > for most people who have IgAN). I should know - that's what

happened to

> > me.

> > > In other words, it appears that while heavier proteinuria is a

risk

> factor

> > > on its own for progression to esrd, it does not appear to be

the primary

> > > mechanism of injury to the kidneys when you have IgAN. In that

scenario,

> > > it's very disputable as to whether the benefits of prednisone

clearly

> > > outweigh the risks - unless proteinuria is heavy enough to be

treated on

> > its

> > > own.

> > >

> > > Oral steroids can be " miracle drugs " . But they are so only for a

> > relatively

> > > short time.

> > >

> > > Pierre

> > >