Re: remission

[Guest guest]

Remission is sort of a vague word when it comes to IgAN. It's certainly not

too unusual for proteinuria to go into remission, especially in pediatric

cases. I'm not sure this is the same as the IgAN itself going into

remission. For people like me who never have flareups of blood in the urine

or heavy proteinuria, the IgAN could be seen not only as being in remission,

but as not even existing. And yet, after many years, the damage is done.

Beating the proteinuria into remission does not necessarily stop the

underlying disease process.

On the other hand, many children and even adults who are first diagnosed

with IgAN when they are having heavy proteinuria still have virtually normal

kidney function. So, getting the proteinuria to go into remission is

certainly a very positive step, and the gradual loss of kidney function over

many years may be arrested, given the drugs we have today. But we don't

really know this at this point.

In order to see whether there is true remission, it would be necessary to do

repeat biopsies. Naturally, nephrologists would be loathe to order repeat

biopsies for this purpose alone, in the absence of any other reason to do

one - since there is some risk involved with a biopsy. I recall a Japanese

study published a few years ago in which this was actually done, and the

results seemed to be that yes, it's possible to arrest the actual IgAN. A

with many studies, it always seems to be somewhat inconclusive though, at

least to some degree.

But at any rate, stopping the proteinuria is an important step.

Pierre

[Guest guest]

Hi Phyllis,

The thing with IgAN is that there doesn't need to be anything remarkable for

it to progress. It just seems to happen without calling much attention to

itself. In my case, as I said, I never to my knowledge had any " flare-ups " ,

no visible blood in the urine, no proteinuria higher than about 800mg per

day.

There was always only microscopic blood in urine, and a bit later, some

protein started to appear. About a decade or so after a GP first detected I

had blood in my urine, I started having high blood pressure. This was the

most remarquable symptom, really. As the years went by, it got harder and

harder to control.

All this time, there wasn't enough actual inflammation to cause heavy

proteinuria. There is more than one process going on with IgAN, I think.

There is active inflammation, which causes the visible blood in urine and

the heavier proteinuria. But what eventually kills the kidneys is really the

IgA immune complexes choking up the mesangium in the glomeruli. The

mesangium is really just supporting matter for the little blood vessels that

make up a glomerulus. The IgA complexes get deposited in there somehow, and

gradually, the mesangium in each glomerulus expands (it's called

hypercellularity), and as it expands, it squeezes the little blood vessels

(which are really the filtering units) until no blood can pass through them

(the " lumen " is closed-off), and then you have glomerular scarring and the

affected glomeruli don't work anymore. As more and more glomeruli succomb to

this process, the glomeruli in the other nephrons have to do more of the

work to compensate for those that don't work, and because they are

overworked, they also die off gradually, in addition to what the IgAN itself

is doing to them. Eventually, you just run out of kidney function.

The proteinuria is caused by the IgAN, but it's not the IgAN. Granted,

proteinuria is thought to be one of the risk factors for progression, but it

can be mild proteinuria as I had until the very end.

The biggest risk factor of all is probably blood pressure. High blood

pressure on its own can cause progressive kidney failure in the absence of

any other kidney disease, so when you add that to the damage the IgAN itself

is doing, it's bound to get you to dialysis sooner. After my kidney biopsy

in 1993, I've been mostly on ACE inhibitors (until I developed an allergic

reaction), and then their close cousins, the Cozaar-type drugs (angiotensin

II receptor blockers). There's no way to say if these drugs bought me more

time. It would probably have been 10 years from the time of biopsy anyway -

it was nine years, in the end, and 25 years from that faithful day when the

GP asked me if I knew I had blood in my urine.

Pierre

Re: remission

> Thank you for explaining the proteinuria issue. I've been confused about

that one! What indications were significant in your diagnosis and

progression?

> Phyllis

>

> " Pierre L (groups) " wrote:

> Remission is sort of a vague word when it comes to IgAN. It's certainly

not

> too unusual for proteinuria to go into remission, especially in pediatric

> cases. I'm not sure this is the same as the IgAN itself going into

> remission. For people like me who never have flareups of blood in the

urine

> or heavy proteinuria, the IgAN could be seen not only as being in

remission,

> but as not even existing. And yet, after many years, the damage is done.

> Beating the proteinuria into remission does not necessarily stop the

> underlying disease process.

>

> On the other hand, many children and even adults who are first diagnosed

> with IgAN when they are having heavy proteinuria still have virtually

normal

> kidney function. So, getting the proteinuria to go into remission is

> certainly a very positive step, and the gradual loss of kidney function

over

> many years may be arrested, given the drugs we have today. But we don't

> really know this at this point.

>

> In order to see whether there is true remission, it would be necessary to

do

> repeat biopsies. Naturally, nephrologists would be loathe to order repeat

> biopsies for this purpose alone, in the absence of any other reason to do

> one - since there is some risk involved with a biopsy. I recall a Japanese

> study published a few years ago in which this was actually done, and the

> results seemed to be that yes, it's possible to arrest the actual IgAN. A

> with many studies, it always seems to be somewhat inconclusive though, at

> least to some degree.

>

> But at any rate, stopping the proteinuria is an important step.

>

> Pierre

>

>

>

>

[Guest guest]

Wow Pierre,

I think that is one of the most complete explannation of the processes going on

with IgAN that I have ever read!

Thanks so much for that thorough explannation.