Likelihood of kidney problems

[MCC]

Since my relapse after 2.5 years off meds I find myself preoccupied with the future.

I felt I had beaten it but now feel a bit doom and gloom and like it's going to 'get me' in the end.
Reading about kidney involvement it seems this is a major cause of death in people with wegeners. Does anyone have specific stats on this? I'm not sure if what I've read on the net is old.

[lag713]

I'm happy that you had 2.5 years of a med free remission. I'm jealous as I have not reached remission yet but I understand your feelings of doom and gloom.

I get a bit preoccupied with the future too. It's hard not to worry about what may happen. I try to manage my expectations as best as I can. I know that not everyone will ever go into remission and most that go into remission will eventually relapse. I've come to think about it as a lifelong issue that will go away and return but never be truly beaten. We don't necessarily have reduced life expectancies. In the end (lets say at a ripe old age of 80), we will go one way or another, Wegener's or otherwise. This life-threatening illness makes you consider your own mortality too often. I don't think you need to worry about what might get you in the end. All you can do is do your best to be healthy (sleep, healthy diet, exercise, low stress, etc.), comply with treatment recommendations, and continue to go to your follow-up appointments. You can fight to beat the statistics! Remember that the stats are always improving for us with better meds, early intervention, and frequent check-ups.

I hope that you will get back into remission soon.

[annekat]

I figure a lot of us don't get kidney involvement, and that it shouldn't be assumed that we will eventually get it. If we do get it, and it is caught early, it should be treatable and able to be recovered from.... people who have it can speak to this a lot better than I can. But I'm assuming that the people who die of WG kidney involvement didn't catch it before a lot of damage was done that couldn't be undone. So we need to keep on top of the testing and monitoring of our kidneys. A couple of active forum members passed away from massive blood infections due to being immunosuppressed and unable to fight them off, if I understand correctly, and that is also a well-known cause of death in WG patients.

[Wegetarian]

I We don't necessarily have reduced life expectancies.

I guess the first year is really dangerous, and the following few years. But after 5 years the mortality didn't seem to be that different from the general population.

I wouldn't be that worried about future kidney involvement, I'm more worried about the drugs not working and switching to some drugs which makes my immune system switch off and going the way annekat said. I expect to go to blood tests for the rest of my life, so any problems could be found fairly early.

Guess with the kidneys the most worrying thing is that they can be destroyed real bad before we'd get any symptoms. Someone I know with another vasculitis actually found out herself that her kidneys were bad from testing her urine in Med school (some sort of lab technician). She retested it and had a hard time to get the people from the med lab to belive her, but if she hadn't found out it might have been quite dangerous when symptoms would start to appear.