Question

[Guest guest]

I don't mean to be the one answering all the questions here, and anyone else

is certainly welcome to join in. I just happen to be at the computer at the

moment.

Your experience is common, to my knowledge. High creatinine does not

necessarily go hand in hand with the macro-hematuria episodes for one thing

(although it certainly can). In IgAN, the high blood pressure (i'll use the

abbreviation htn, for hypertension), when it comes, often is hard to

control. I sure know mine is. The htn is not caused so much by the

glomerulonephritis, which is the inflammation of the glomeruli, as much as

it is by the amount of glomerulosclerosis, which are the scarred,

non-functional glomeruli that have been progressively damaged over the

years. Usually, the more glomerulosclerosis you have, the more htn you have,

as the kidneys release blood pressure raising hormones in an attempt to

restore blood perfusion through the scarred tissues.

It has been my experience (my own, and talking to many others) that it is

near impossible to consistently control severe htn in IgAN without a

combination of drugs that includes at least a diuretic, because there is

already a tendency to retain fluids (even though it may not be visible)

because of the reduced kidney function, and some htn meds do tend to cause

the body to respond by retaining more fluid. When we try to artificially

reduce blood pressure as we do with meds, the body wants to restore the

blood pressure to what it thinks it needs (higher), and it has many ways of

doing this, ranging from the kidneys themselves to the sympathetic nervous

system. This is why it's so hard to fight it.

Pierre

Question

> One thing that I find stange is that from when I was 5 up until I was

> about twenty, whenever I had an infection my urine would go dark

> brown, showing excessive blood, but my creatine levels and blood

> pressure were normal once I had recovered. Now, my blood pressure is

> very hard to control, and the only medication that seems to work is a

> beta-blocker, Nebilet, and my urine although permanently +++, never

> realy goes anywhere near as dark as it did. Why would this be so?

> regards john

>

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[Guest guest]

Leanne,

Yes something like that does happen to me, occasionally. Seems like it happens when I move my head like you've described. The other time it happens is sometimes if turn over in bed, like from my right to my left side. I'll experience really intense, room spinning dizziness for minute or so, then it subsides and I go back to sleep. Odd. I see the doctor this week and it's on my list of things to ask him about. Can't imagine what he'll say but I'll let you know