Has anyone experienced the following

[moira]

diagnosed with WG in 2010 it affected my kidneys. been in remission however now my creatinine levels are rising although no other signs of WG. any one else experienced this?

[AndrewT]

Dear Moira,

Yes I have, I'm now on dialysis; the usual final outcome of kidney disease/attacks. When you say 'rising' how high exactly, or don't you know. I wouldn't worry unless it regularly climes, ie monthly, and gets near, or over, 5-600, or so. Have 'they' discussed dialysis with you? If you have any questions please do ask me; I can't necessarily( that dosn't look right) comment on your situation specifically but I can tell you a lot in 'general terms, that may well be useful. Thsi also applies to anyone else who may need information/reasurance, on the above.

I hope that this is helpful, do let me know

Best wishes

AndrewT

[Jann]

Moria,

I was also Dx with WG in 2010 and also had my kidneys affected. I get test blood and urine every 8 weeks. I have have had a couple jumps in ccretinine but it has gone back down on the following visit. My ANAC level has no varied much over that period. My consulant always asks how do I feel as that is a good indication of the vasculitis flaring.

Best thingis to talk to your consultant he will look a all the medical marker but also think about how you fee.

[HiveMind]

My creatinine is at 123 and my GFR is at 40. Should I be concerned?

[braindamage]

Initially Createnine at 205 and kidney function at 23%. After 6 years I'm at 123 Createnine and 56% kidney function. If you have any concerns, please contact your Speciallist. ATB.

[Tony-LakeDistrict]

over the last 5 years my Creatinine has been on average about 200, & never below 140. Kidney function started at 14, after 3 years up to 46, now 30. My ANCA never below 60.

& I`m doing O.K.

everyone with Vasculitis would seem to have their own `normal` as far as readings are concerned.

Don`t forget you can ask to join Renal Patient View, most large hospitals seem to offer this service (you can look up your own blood results on your computer at home). which means you can be primed with questions before you see your specialist !

Good luck Tony

[Tippon]

Hi Moira

I was diagnosed in 2010 too, and had the same problem. My WG was in remission, but my kidneys had already been damaged from the initial 'attack' that put me in hospital and got me diagnosed.

In my case, the kidney damage was irreparable, and my kidney function is in the single figures, and I'm waiting for a transplant.

Hopefully this isn't the case for you, but if you haven't already, get it checked out. It could be a problem with your kidneys, or a sign that the WG is flaring up.

Good luck

Ryan.

[John_Mills Volunteer]

It does suggest that all may not be well in the kidney department, does your doctor not seem concerned about it? It is not the actual creatinine level that is significant it is the fact it is rising that is of concern ....as Tony has said everyone seems to have their own normal... it is when it changes you should be concerned and things should be investigated ...please talk it over with your consultant as already suggested...

John

[moira]

Thanks for all your responses. My GP is trying to get hold of my Renal Consultant but to no avail to date! I had a very nasty cold virus and chest infection at the beginning of the year GP seems to think this may have triggered the vasculitis? Wondering what will happen is very syressful i.e. treatment etc.