Originally Posted by
makabe
Hi, everyone,
It has been a while since I have posted. Since diagnosis in Nov. 2011, I have mainly had sinus/breathing/joint issues, but not kidney problems. That said, I have major kidney stone issues, but no one believes it is related to GPA. I have been on injectible MTX since October 2014 (switched from oral, started in July 2012) along with more rounds of pred than I care to count. Right now, I am still on MTX, 30 mg. of prednisone daily, and started a clinical trial for Orencia (so not sure if I am getting the drug or not.) For several months now, I have had occasional swelling in my ankles (something I have never had in my life.) In the last three weeks, the swelling is significant and fairly constant. It will go away when I go to sleep at night, but is back within an hour or two once I get up in the morning. I am drinking about 100-120 oz of water a day to stay hydrated, which I would think would flush things. I am not allowed to take a diuretic b/c of a heart issue.
I can't shake the nagging doubt that something is going on with my kidneys. None of my docs seem particularly concerned at this point, but I am getting nervous. I want to trust what they think! My last labs did show a small amount of blood in my urine.
I don't actually know what the symptoms/signs are if GPA affects your kidneys, since that has never been my issue. Should I be concerned? What should I be looking for?
TIA.
Those were my early symptoms and I was dx'd with RA and the next year I flared and all my issues came together like a puzzle.
I have kidney involvement but they are functioning normally and the Dr says to keep doing what ever it is that I am doing because they should not be working I destroyed part of my kidneys from the wegs!
I have a lot of trouble with edema and I have questioned whether or not this was related to the kidneys and told that it was doubtful!
I also have COPD and the pulmonary Dr says that it could be caused from the fluid from my lungs and the body not being able to process excess fluids, or some such thing!
What I do know is that when I swell up, its harder to breathe or walk. But the legs ache also!
I take Lasix, and they want me to take it daily but its hard on my bladder and me in general! I have made a point to ask for a change in that med but cant do it right now they tell me! I take it as needed and usually at least 2 times a week!
What has helped with the swelling to a point is cutting sodium out of my diet and limiting as much as I can!
I am in remission so I just keep doing what they tell me and work with the swelling! I can also understand your concern for the kidneys as I also have diabetes and think about things associated with that also.
I've come to believe that it is all part of the disease and is a evil in this disease that wont go away for long periods!
What you have going on is certainly something that the Dr needs to address for you!
I have my sinus worked on at least once a year and the ENT says there is no wegs that he can see causing my sinus problems, even though I have confirmed Wegeners!
Nobody knows how we got to the top of the hill. But since were on the way down, we might as well enjoy the ride!
James Taylor, Secret Of Life
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