Renal involvement???

[gwenllian111]

My lungs are getting inflammed, and for a few months now, i've had relentless pitting odema (swelling) in my ankles, legs, fingers, and face.
I have plus 1 protein on urine, 2 plus on leukoctytes (urine) and high urates in blood - creatanine so far ok.

Are these signs of kidney problems to come??

I've had kidney involvement before, but about 20 years ago and I was so young I don't remember much about it.

Thanks

[gwenllian111]

I also have leg/calf pain, which feels muscular....but extremely painful!!!:sad:

[Al]

My lungs are getting inflammed, and for a few months now, i've had relentless pitting odema (swelling) in my ankles, legs, fingers, and face.
I have plus 1 protein on urine, 2 plus on leukoctytes (urine) and high urates in blood - creatanine so far ok.

Are these signs of kidney problems to come??

I've had kidney involvement before, but about 20 years ago and I was so young I don't remember much about it.

Gwen--these are signs that the kidneys are distressed, but if the creatinine clearance is normal, they still have a lot of reserve. However, if you have lung inflammation, your ANCA are probably out in force, and could involve the kidneys. This is especially likely with your history. How is your doc planning to combat the lung inflammation?

Al

[gwenllian111]

Distressed is a good description.

I'm currently on 2000mg mycophenalate (cellcept) and 30 mg pred, but it's certainly not put me into remission. I'm still struggling with arthritis, and hoping to start ANTI TNF treatment for that soon, if my lungs settle down properly.

Seeing rheumy, kidney specialist and lung specialist and a 'joint vasculitis' clinic next week.

Thank you for your reply.

[Al]

Distressed is a good description.

I'm currently on 2000mg mycophenalate (cellcept) and 30 mg pred, but it's certainly not put me into remission. I'm still struggling with arthritis, and hoping to start ANTI TNF treatment for that soon, if my lungs settle down properly.

Seeing rheumy, kidney specialist and lung specialist and a 'joint vasculitis' clinic next week.


Anti-TNF treatment is somewhat controversial, Gwen, because there are (like with all these things) pluses and minuses. I'd like to know what your team has to say, if you have time to report.

Al

[delorisdoe]

The anti tnf is for the arthritis not the wegeners right?

[Al]

The anti tnf is for the arthritis not the wegeners right?

It has been used in GPA, and discussed in regards to other autoimmune diseases, Leigh. It can be somewhat effective, but there is an increased risk of some kinds of cancer. That is the double-edged sword.

Al

[delorisdoe]

My question was particular to gwens case though and I do believe it is going to be used for her arthritis and not as a wegeners treatment. If I remember correctly Gwen you have been recently diagnosed with a form of arthritis?

[aewaustin]

Gwen,

I have kidney involvement and for your situation you need to go to a kidney doc and have them look at the UA under a microscope, they can not do this in a lab (they don't have the expertise and it has to be done within an hour). The doctor will "spin" the UA and then look for granulomas, if they have come through then it is most likely Weg's attacking the kidneys. I had this even when my creatine was normal. My kidney doc is great to do this test, but don't depend on them to help with Wegs, mine has had horrible plans for me for the Wegs but I went to experts. I now just go to her to have the spin UA test. This is the way I was diagnosed, all my other tests were normal including SED rate and I am ANCA negative.

Anna

[Al]

Gwen,

I have kidney involvement and for your situation you need to go to a kidney doc and have them look at the UA under a microscope, they can not do this in a lab (they don't have the expertise and it has to be done within an hour). The doctor will "spin" the UA and then look for granulomas, if they have come through then it is most likely Weg's attacking the kidneys. I had this even when my creatine was normal. My kidney doc is great to do this test, but don't depend on them to help with Wegs, mine has had horrible plans for me for the Wegs but I went to experts. I now just go to her to have the spin UA test. This is the way I was diagnosed, all my other tests were normal including SED rate and I am ANCA negative.

Interesting, Anna. This would make you one of the very few non-ANCA weggies. It must have been tricky to diagnose.

Al